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Health Hats, the Podcast

100 Episodes

47 minutes | Jun 26, 2022
Family, a Magic Lever of Best Health. 3 Danny van Leeuwen’s
Introducing 3 generations of Danny van Leeuwen's. Inclusive, blood, intentional family lore. Spiritual health can come from family. From the Holocaust to today. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript)   Proem.. 2 Catching up 02:29. 2 We’re all three well partnered 03:22. 2 Forgetfulness runs in the family 04:27. 3 The meaning of our name 05:07. 3 Music in our lives 07:08. 4 Uncle Danny’s feeling it 09:22. 4 The team: care coordination and family 10:21. 5 Sleep 13:04. 5 The life of Danny III 14:06. 6 Joey van Leeuwen 15:16. 6 Visiting Morocco 18:06. 7 Danny III’s health 20:32. 8 Travel and language 22:47. 8 More about Morocco 23:34. 9 Uncle Danny, tell us a story 24:30. 9 Opa returning from the concentration camp 26:00. 10 Israel and the Kibbutz 27:28. 10 Screwed up paperwork 29:26. 11 First meeting my Uncle Danny 30:48. 11 My dad, Ruben van Leeuwen 31:47. 12 Uncle Danny’s first wedding 32:34. 12 Danny III’s calming voice 33:24. 12 Uncle Danny’s 90th Party 34:40. 13 Concentration camp, faith, draft counseling 35:13. 13 We’re van Leeuwen’s 39:40. 14 Uncle Danny in Jerusalem 42:19. 15 Reflection 45:03. 15 Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn  via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute®  (PCORI®), its Board of Governors or Methodology Committee. Sponsored by Abridge Inspired by and grateful to Henri B, Evaline, Nathan, Kato, Leon, Ruben, Daniel, Lea van Leeuwen   Links Crescendo Baby Music on a Facebook page Danny III on SoundCloud, Fireship first recorded by (the Weavers) Peter Paul and Moses playing Ring Around the Roses. September Song. City of Chefchaouen Rabat kibbutz Unilever Kathy’s Consulting Related podcasts About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once.  I'm the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare.  Let's make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge.  Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements.  Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines. The Show Proem I talked about the magic levers of best health in my first blog posts in 2012 – ten years and 535 posts and episodes ago—pretty mundane ...
30 minutes | Jun 12, 2022
Collaborative Notes, Engaged Partners, Fewer Errors
Patients, care partners & clinicians can reduce record errors with collaborative notes. Dr. Peter Elias shares his note-writing with collaborative partners. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Introducing Peter Elias 01:41. 2 Medical documentation over the years 02:42. 2 Records go from paper to electronic 05:55. 3 Copies of doctors’ notes to patients, sometimes 7:16. 3 Always 10:28. 4 Patients feel reassured 11:21. 4 Care planning and collaborative notes 12:20. 4 Challenging conversations 12:46. 4 Families, records, getting it right 14:00. 5 Using a scribe to assist with documentation 15:16. 5 Misdiagnosis and long-standing error 16:24. 5 Preserving data, accurate data, workarounds 18:02. 6 Insurance companies 20:24. 6 Open Notes, relationships with clinicians 21:27. 6 Not at your best at the doctor’s office 22:13. 6 Getting the most out of it 24:10. 7 Coaching other docs 25:04. 7 Emerging issues 26:40. 8 For other clinicians 27:36. 8 Reflection 29:12. 9 Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn  via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute®  (PCORI®), its Board of Governors or Methodology Committee. Sponsored by Abridge Inspired by and grateful to Liz Salmi, Tom Delbanco, Danny Sands, Janice Tufte, Alexis Snyder, Jan Oldenburg, Virginia Lorenzi Links Society for Participatory Medicine How accurate is the medical record? A comparison of the physician’s note with a concealed audio recording in unannounced standardized patient encounters in the Journal of Informatics in Health and Biomedicine How to Correct Errors in Your Medical Records Correcting Errors In the Electronic Medical Record Impact of Electronic Health Record Systems on Information Integrity: Quality and Safety Implications Beat cancer? Your Medicare Advantage plan might still be billing for it. Related podcasts https://health-hats.com/pod168/ https://health-hats.com/opennotes-a-gold-mine-of-community-organizing/ https://health-hats.com/misdiagnosis-how-can-patients-help-doctors/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once.  I'm the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare.  Let's make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge.  Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website).
41 minutes | Jun 5, 2022
Garbage In Electronic Data is Faster Garbage
How can medical document errors become easy to fix, everywhere the error lives, & fit in the workflow? Virginia Lorenzi and HL7's Patient Empowerment Workgroup. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Introducing Virginia Lorenzi 03:31. 2 HL7's Patient Empowerment Workgroup 04:56. 2 An intelligent customer understands some of the technical 05:45. 2 Requests for corrections – a sign of engagement 07:12. 3 Fixing errors - from the fifties 08:01. 3 Patient satisfaction and errors 09:30. 4 Release more information, find more errors, feel worse 10:07. 4 Burden on clinicians, burden on patients 11:42. 4 What if you could push a button and start and track the correction process 12:12. 4 Connectathons – a meeting of the minds in a sandbox 13:17. 5 Making decisions about data standards 15:32. 5 Eureka, we have standards. Now, who’s going to use them? How easy can we make it? 18:41. 6 An error is not an error, is not an error 21:11. 7 Ink on paper 24:07. 7 HIPAA-federal rules about requirements to correct errors 26:38. 8 Misdiagnosis – Out damn spot! 28:54. 9 Impact of errors 32:07. 10 Motivation to fix errors 33:50. 10 Reflection 38:44  12 Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn  via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Cohelo as originally played by Mandrill, here played by Lechuga Fresca Latin Band, Danny van Leeuwen soloing on Baritone Sax Web and Social Media Coach Kayla Nelson @lifeoflesion The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute®  (PCORI®), its Board of Governors or Methodology Committee. Sponsored by Abridge Inspired by and grateful to Liz Salmi, Tom Delbanco, Peter Elias, Grace Cordovana, Dave DeBronkart, Debi Willis, Laura Marcial, Bryn Rhodes Links How accurate is the medical record? A comparison of the physician’s note with a concealed audio recording in unannounced standardized patient encounters in the Journal of Informatics in Health and Biomedicine the Patient Empowerment Workgroup HIPAA, you have a right to get your record fixed HIPAA rule says that if a record is amended or if a record amendment the 21st Century Cures Act. the Patient Requests for Corrections FHIR Implementation Guide United States Core Data Set for Interoperability. How to Correct Errors in Your Medical Records Correcting Errors In the Electronic Medical Record Impact of Electronic Health Record Systems on Information Integrity: Quality and Safety Implications IHE Connectathon: A Unique Testing Opportunity Late addition: Beat cancer? Your Medicare Advantage plan might still be billing for it. Related podcasts https://health-hats.com/pod158/ https://health-hats.com/opennotes-a-gold-mine-of-community-organizing/ https://health-hats.com/misdiagnosis-how-can-patients-help-doctors/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very...
30 minutes | May 22, 2022
Burnout, Healthy Habits, American College of Lifestyle Medicine
An epidemic of burnout among health workers. Learn about the American College of Lifestyle Medicine's solutions 6 pillars and 3 teaching axioms from Dr. Robyn Tiger. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Introducing Dr. Robyn Tiger 01:05. 1 A complex case physical, mental, spiritual 02:56. 2 The practice of Lifestyle Medicine 06:09. 2 Eureka 09:00. 3 Manage manageable stress 09:50. 3 Forming good habits 12:19. 4 Should, why, how 14:33. 4 Burnout among family caregivers 16:40. 5 Accessing Lifestyle Medicine 18:52. 5 Getting to how 22:21. 6 Burnout – personal and system issues 23:46. 6 Global celebration 24:18. 7 Reflection 26:28  7 Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn  via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute®  (PCORI®), its Board of Governors or Methodology Committee. Sponsored by Abridge Inspired by and grateful to Geri Lynn Baumblatt, Mary Anne Sterling, Lisa van Leeuwen, Mark Heyward Johnson, Smitty Heavner, Chris Friese, Jane Sarasohn-Kahn Links American College of Lifestyle Medicine stressfreemd.net to reach Dr. Robyn Tiger Lifestyle Medicine Week annual lifestyle medicine conference in Orlando NAM Clinician Well-Being Collaborative National Plan for health workforce well-being,  Health Populi As Americans Start to Return-to-Work in the Summer of COVID, Mental Health is a Top Concern Among Employers The ramifications of health care worker burnout Related podcasts https://health-hats.com/help-the-helpers-care-for-healthcare-workers-now/ https://health-hats.com/help_the_helpers_in_crisis/ https://health-hats.com/difference_collaborative/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once.  I'm the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare.  Let's make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge.  Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements.  Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines. The Show Proem On the second day of my first management gig as nurse manager of an ICU, I noticed that staff nurses seldom took breaks (bathroom or meal). Surprised that this would be the reason for my first impromptu staff meeting,
6 minutes | May 15, 2022
From Here to There: Accessibility on the Camino de Santiago
Managing rural and urban travel with my set of abilities. Roots, dips, inclines, Roman roads, elevators. falls. We did 170 miles (I did 70). A hoot and a half. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript)   Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn  via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion The views and opinions presented in this podcast and publication are solely my responsibility and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute®  (PCORI®), its Board of Governors or Methodology Committee. Danny van Leeuwen (Health Hats) Sponsored by Abridge Inspired by and grateful to Linda and Mike DeRosa, Kate Higgins, Mary Lawler, Ann Boland, Ed Lomotan, Kara Ayers, Carole Blueweiss, David Bourne, Simon van Leeuwen, Portugal Green Walks, Progressivecare, LDA Links Portugal Green Walks The Camino de Santiago for People with Disabilities Walk the Camino. Customers with Disabilities Accessible Camino   Related podcasts https://health-hats.com/pod165/ https://health-hats.com/pod164/ https://health-hats.com/pod162/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once.  I'm the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare.  Let's make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge.  Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements.  Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines. The Show I’m back. What an adventure along the coast of Portugal and Spain to Santiago de Compostela.  I have hours of material that I will produce over the next few months. Today, a very brief episode about accessibility. Remember, I have Multiple Sclerosis, which affects my stamina, balance, and vision.  I can stand, I can walk. Unless I’m in a small room, I need forearm crutches for walking or an electric wheelchair. I can fold my wheelchair, roll it, and assist in getting it in and out of the car. I am not wheelchair dependent. I walk a minimum of 3500 steps a day, every day. Not all at once, but in segments.  I fatigue, but I can recover relatively quickly. I manage my double vision, most of the time. I can hear with hearing aids, sometimes too much. I can breathe, talk, eat, and toilet unassisted. My disabilities and pain levels are mostly moderately annoying. I describe a personal adventure with my extended family and those I’ve met along the way. Clearly, your adventure would be different.
6 minutes | May 8, 2022
Camino de Santiago 2022: Pilgrimage with Angels
Lost my wheelchair charge on Day 1. OMG. Busted. Until angels stepped in. Grateful, grateful, grateful Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Watch the video here Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript)   Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn  via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion The views and opinions presented in this podcast and publication are solely my responsibility and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute®  (PCORI®), its Board of Governors or Methodology Committee. Danny van Leeuwen (Health Hats) Sponsored by Abridge Inspired by and grateful to Linda and Mike DeRosa, Kate Higgins, Mary Lawler, Ann Boland, Ed Lomotan, Carole Blueweiss, David Bourne Links The video version of this episode Related podcasts https://health-hats.com/pod156/ https://health-hats.com/pod154/ https://health-hats.com/days-6-12-camino-de-santiago-rejuvenated-inspired-not-yet-peaked/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once.  I'm the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare.  Let's make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge.  Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements.  Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines. The Show Okay, let me see if I could tell you a story while I'm going. So it's the story of angels. And I started the first day on our trip. I realized that for whatever reason, I didn't have my charger and I had a Plan A, Plan B and a Plan C. With a Plan A was that we find somebody in Porto that could sell a charger that was appropriate. Plan B was somebody who would rent me a chair that had a charger. And I just take the charger and Plan C I guess I had a plan D. Plan C was to take just to rent a chair, another chair, and then the plan was to have my son Simon get one from. The plan D was, he did get the charger from the company in Austin. When I got my truck, well plan, they didn't work. Nobody had plan B didn't work because. Like there's nothing to rent because I would've had to bring the chair back to the Porto from Santiago de Compostella. Plan D was that the company ForceMech couldn't ship it directly because they weren't allowed. So I, we ended up calling like all these different companies. I didn't, I actually, I called nobody, my wife, Linda few people call companies the hotel that we were staying at. Nothing. So I started arranging with my son to have the chargers sent to him in Boston,...
20 minutes | Apr 24, 2022
Reprise: Camino de Santiago. Rejuvenated, Inspired #21 & 164
Heading to Portugal. Ready. Listen to last episode from '19 Spanish Camino. Sounds of tapping of my canes, white storks, cathedral bells chiming. Stay tuned. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, hard-of-hearing or deaf? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on transcript) Proem.. 1 Advantages of progressive illness 03:20. 1 Heading out shortly 04:45. 2 Week 2 06:01. 2 Inspired 07:14. 2 Quieting my mind 09:31. 3 Tap, tap, tap of my two canes 11:58. 3 Mobility package 15:45. 3 White storks in Portomarin 16:14. 4 Santiago de Compostela Cathedral 16:39. 4 Heading home to Boston 17:35. 4 Reflection 17:56. 4 Links Rien MacDonald's Hope Initiative podcast Maria Xenidou's Impact Learning podcast Regina Holliday's Cinderblocks conference Marly Camino Guided Tours Related podcasts Camino de Santiago Episodes Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn  via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute®  (PCORI®), its Board of Governors or Methodology Committee. Sponsored by Abridge Inspired by and grateful to David Bourne, Carole Blueweiss, Rien MacDonald, Maria Xenidou, Regina Holliday, Mary Lawler, Ann Boland, Mike and Linda DeRosa, Kate Higgins, Cynthia Meyer About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once.  I'm the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare.  Let's make some sense of all this. To subscribe go to the blog https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge.  Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements.  Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines. The Show Proem I'm getting ready to go on a pilgrimage to Portugal and Spain. It's the Camino de Santiago. And for those of you who've been following me, know I've been podcasting about it. I've been podcasting about my previous trip in 2019 when we went to Spain and my training. I've gotten a lot of comments on these episodes, and mostly they're attaboy comments, but some asked me if I'm afraid. Aren't I scared? I think that's a good question. At first, I just wanted to dismiss it. What could happen? I'm going with friends, lots of other people are on this pilgrimage. It was safety uneventful in 2019 when we went. But to be honest with you, yes, I have some fear. I have a “what if” kind of thing. What if this, what if that, what if I have an exacerbation of my MS? What if I fall?
47 minutes | Apr 17, 2022
Patient Advocates on National Boards: Mind the Sausage
Engaging patients differs depending on the role. Those on national Boards lead, strategize, advocate, communicate. Adam Thompson is on the Board of NQF. Listen in. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Introducing Adam Thompson 02:38. 1 Patient-caregiver advocates on national Boards of Directors 04:21. 2 Activist, Advocate, Conduit, Leader 06:15. 3 The Ryan White HIV/AIDS Program 09:42. 4 Pulling the curtain back. Feeling our oats. 13:52. 4 The right place to make a difference and re-charge 18:26. 5 Learn, coach, mentor 20:43. 6 Listen, reveal, shout 25:50. 7 Levers of power. Drunk the Kool-Aid. Now what? 30:56. 8 Transparency. The sausage gets made. 34:17. 9 More on conduits 39:39. 10 Engage, dissemination, act 41:02. 10 Is seeking public comment enough? 42:54. 11 Reflection 45:00  11 Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn  via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute®  (PCORI®), its Board of Governors or Methodology Committee. Sponsored by Abridge Inspired by and grateful to Nikki Montgomery, Matthew Pickering, Jan Oldenburg, Danny Sands, Matt Hudson,  Dana Gelb Safron, Nakela Cook, Christine Goertz, Kristin Carman, Luc Pelletier, Jan Oldenburg, Sharon Levine, Kara Ayers Links Adam Thompson, LinkedIn National Quality Forum (NQF) PCORI (Patient-Centered Outcomes Research Institute) Dr. David Nash Ryan White program Dolores Dockrey Dr. W Edwards Deming called it profound knowledge. Related podcasts https://health-hats.com/pod110/ https://health-hats.com/pod145/ https://health-hats.com/pod153/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once.  I'm the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare.  Let's make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge.  Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements.  Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines. The Show Proem As a nurse, I studied individual health. Then I became a student of organizational health. That led me to management and leadership - all with the mind to get stuff done. Done for people, with people, by people -patients, caregivers, and direct care clinicians. My role changed at each step.
9 minutes | Apr 3, 2022
Portugal Camino Pilgrimage: Training with Disabilities. Fun.
Not about walking miles & managing shoes. My training includes mobility and audiovisual prep. Bear with my experiment. Podcast, YouTube, & article. A bit rough. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Watch the video here Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Training Day 1: Cold 01:21. 1 Walking, pushing my chair 05:46. 2 Day 1 Training Debrief 06:37. 2 Crossing a busy street. 07:35. 2 Reflection 08:31. 2 Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn  via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion The views and opinions presented in this podcast and publication are solely my responsibility and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute®  (PCORI®), its Board of Governors or Methodology Committee. Danny van Leeuwen (Health Hats) Sponsored by Abridge Inspired by and grateful to Linda and Mike DeRosa, Kate Higgins, Mary Lawler, Ann Boland, Ed Lomotan, Carole Blueweiss, David Bourne Links The video version of this episode Related podcasts https://health-hats.com/pod156/ https://health-hats.com/pod154/ https://health-hats.com/days-6-12-camino-de-santiago-rejuvenated-inspired-not-yet-peaked/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once.  I'm the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare.  Let's make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge.  Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements.  Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines. The Show Proem In the background, you hear my wheelchair as I train for our 200-kilometer Portugal’s north coast to western Spain hike coming up soon. I feel 10-years-old and 70.  Ten, because I’m jumping up and down in my head and want to sleep in the car till we go. Seventy because I am a two-legged, cisgender old white man of privilege who gets around with his Forcemech electric wheelchair and Ergobaum forearm crutches. My training is not about walking miles and managing my shoes but includes mobility and audiovisual prep. So, bear with me as I experiment with both. You’ll be hearing about my mobility training during the podcast and video and watching the results of my audio-video experimentation. It’s all a bit rough. And fun, fun, fun. I’ll take you through a couple of training days in varied weather and on different paths. I’ll post show notes with a transcript for you readers and a link to my YouTube channel for you watchers. Training Day 1: Cold Hey, there.
34 minutes | Mar 20, 2022
Decision Aids: Tools to Support Conversation About Choice.
Decision aids with Dr. Daniel Matlock. Complexity of decisions, agency of decision-makers, timing, the black box, answering questions as they arise. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 The fragility of life strengthens 01:50. 1 Early health decisions for the family 04:22. 2 Endless questions about decision aids. Who, why, what, how? 06:18. 3 Stakeholder participation developing decision aids 10:17. 4 Biased to what? 11:08. 4 As the stakes go up, enter the caregiver & family as stakeholder 11:35. 4 Changing level of agency. So many decisions, like putting in a kitchen 13:12. 5 Who are decision aids for? 15:07. 5 Shared decisions 16:21. 5 One-time decisions, ongoing communication 18:50. 6 Tracking decisions and their impact 19:51. 6 We decided what? How'd it gone? A black box 25:35. 7 Design decisions – in the clinic or outside 27:32. 8 Where do I go to get questions answered when I have them? 27:32. 8 Reflection 31:49  9 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn  via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Joey van Leeuwen Quartet playing Mou's Blues Web and Social Media Coach Kayla Nelson @lifeoflesion The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute®  (PCORI®), its Board of Governors or Methodology Committee. Sponsored by Abridge Inspired by and grateful to Geri Baumblatt, Jodyn Platt, Josh Richardson, Janice McCallum, Lacy Fabian, Michelle Lenox, Michael Mittleman Links All of our team’s decision aids are freely available at www.patientdecisionaid.org. Dan Matlock's email Sharing Decisions About Systemic Therapy for Advanced Cancers Related podcasts Health Hats Series: Young Adults with Complex Conditions Transitioning from Pediatric to Adult Medical Care Health Hats Series: Choices About Your Health with Your Team About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once.  I'm the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare.  Let's make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge.  Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements.  Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines. The Show Proem Welcome to another installment in my series on medical decision-making. I doubt this series will ever end. How can it? Our experiments of one or societal experiments of medica...
13 minutes | Mar 13, 2022
Risk Adjustment, Equity, Movement. Jumping in the Deep End
Why measure health outcomes? What information comes from outcome data? What action does the information motivate? How do disparities figure in? Why risk adjust? Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Knowing enough to be dangerous 02:21. 1 Why measure health outcomes?  04:28. 2 Information from measurement 05:20. 2 Action from information (plus money) 06:07. 2 How do disparities fit in? Look past your nose. 08:12. 2 Risk adjustment 10:29. 3 Reflection 11:44  3 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn  via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Joey van Leeuwen Quartet playing Black Narcissus by Joe Henderson Web and Social Media Coach Kayla Nelson @lifeoflesion Photo by Elise Wilcox on Unsplash The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute®  (PCORI®), its Board of Governors or Methodology Committee. Sponsored by Abridge Inspired by and grateful to Matthew Pickering, Cary Sanders, Rebekah Angove, Lina Walker, Adam Thompson, Ben Zola, Amanda Brush, Ellen Schultz, Laura Marcial, Juhan Sonin, Jennifer Bright, William Lawrence Links Risk Adjustment - Factors Affecting Adjustment CMS Physician Cost Measurement and Patient Relationship Codes Technical Expert Panel National Academy of Medicine DIgital Health Learning Collaborative, National Quality Forum's Cost and Efficiency Standing Committee  GoInvo Determinants of Health Related podcasts https://health-hats.com/pod145/ https://health-hats.com/pod140/ https://health-hats.com/pod133/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once.  I'm the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare.  Let's make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge.  Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements.  Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines. The Show Proem Can grasping risk adjustment contribute to a profound understanding of health inequities and motivate action to improve? Whaaattt are you talking about, you ask? As I write this episode, I’m preparing to join an NQF (National Quality Forum) Risk Adjustment Special Populations focus group. Understanding health disparities through measurement and experience and then acting on that information to improve equity ranks high on my list of advocacy priorities. I’m holding my nose,
35 minutes | Feb 27, 2022
Feb 28th Rare Disease Day: Zebras and Equity #159
Rare diseases as a health equity group. Rare doesn't mean never. Commonalities & differences.Learning from tiny populations. Chat with Doug Lindsay. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 The fragility of health for Doug Lindsay 01:57. 1 Personal medical consultant finding answers 04:10. 2 Rare disease as an equity challenge 05:31. 2 Commonalities of people with rare diseases 09:46. 3 Helicopters, zebras, interns’ disease in physician training 11:13. 4 Undiagnosed disease programs 14:24. 4 Categories of differences across rare diseases 15:28. 5 Comparative effectiveness methodologies 17:31. 5 Using existing models in new fields. Learning from tiny populations 20:59. 6 Leave us with something 23:59. 7 Rare doesn't mean never. Questions mean an opening 25:21. 7 Rare disease as a health equity group 27:04. 7 More than 25-30 million people have a rare disease 28:11. 8 Rare Disease Day 28:48. 8 NORD National Organization for Rare Diseases 30:45. 8 Reflection 33:07. 9 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn  via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute®  (PCORI®), its Board of Governors or Methodology Committee. Sponsored by Abridge Inspired by and grateful to Lynne Becker, Morgan Gleason, Marnie Cartelli, Jill Johnson-Young, Adriana Mallozzi, Wesley Michael, Lauren Reimer-Etheridge, Sara Lorraine Snyder, Alexis Snyder, Jill Woodworth, CJ Rhodes, Rebecca Archer, Shiri Ben Arzi, Lisa Deck Links Doug Lindsay LinkedIn Opinion piece Rare Disease Day PCORI (Patient-Centered Outcomes Research Institute)’s Rare Disease Advisory Panel. Castleman's disease, David Fajgenbaum, the physician at UPenn who found his own cure and wrote the book Chasing My Cure NORD National Organization of Rare Diseases Esquilax Related podcasts https://health-hats.com/rare_disease_research/ https://health-hats.com/lead-by-example/ https://health-hats.com/a-zebra-not-a-horse-rare-patient-voice/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once.  I'm the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare.  Let's make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge.  Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements.  Please let me know. danny@health-hats.com.
40 minutes | Feb 20, 2022
In the Wild: Data to Info to Action & Back & Again #158
Data is not info is not action. Data, cooked into Info could lead to action. People add context, values, culture, experiences, history, biases to data and info. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Introducing Bryn Rhodes and Laura Marcial 04:02. 2 Realizing the fragility of health 06:41. 2 We made which decision? How did it turn out? 09:52. 3 End point? Decision, action, continual learning? 13:26. 4 What data to collect? When to collect it? 14:32. 4 Who does this work for in real life? 15:48. 4 Context matters for blood pressure 18:14. 5 Ongoing learning post research 22:32. 6 Spanning the gulf between specialized expertise 23:52. 6 Data needs infrastructure to become information 26:15. 6 Summarizing for the Public 30:17. 7 Hubris. Satisfied with stopping at results. 33:45. 8 Reflection 39:21. 9 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn  via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute®  (PCORI®), its Board of Governors or Methodology Committee. Sponsored by Abridge Inspired by and grateful to Lauren McCormack, Bill Lawrence, Lygeia Ricciardi, Cynthia Cullen, Juhan Sonin, Cheryl Damberg, Jack Needleman, Matthew Pickering, Aaron Carroll, Greg Merritt, Wesley Michael Links Health eDecisions Clinical Quality Framework Initiatives (CQF) FHIR® (Fast Healthcare Interoperability Resources). Healthcare Triage Podcast Triage Science Culture and Reproducibility Series An excellent series about the challenges of research industrial complex values and priorities. So much to learn here even for me, eyeball deep in research funding. Related podcasts Health Hats episodes about Clinical Decision Support https://health-hats.com/clinical-decision-support-technology-still-human/ https://health-hats.com/humanity-before-technology-clinical-decision-support/ https://health-hats.com/a-zebra-not-a-horse-rare-patient-voice/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once.  I'm the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare.  Let's make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge.  Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements.  Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines. The Show Proem
43 minutes | Feb 6, 2022
Health Choices. Knowledge + Behavior. Your Life Depends on It.
Healthcare decisions affect you and others. Complicated for everyone. Knowledge waiting to be implemented. Join this chat with Dr. Talya Miron-Shatz. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Introducing Dr. Talya Miron-Shatz 00:50. 1 Genetic counseling and medical decision-making 04:27. 2 Personal goals, exploration, universal truths, and decision-making 06:52. 2 Consequences, risks, benefits, and alternatives 11:22. 3 Decisions with family caregivers 16:21. 4 Cost of decisions 20:37. 5 COVID, vacation, depression 28:48. 7 Tracking decisions and outcomes over time 29:52. 7 Action, implementation, rather than a new study 35:54. 9 Top three takeaways 39:03. 9 Reflection 41:22  10 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn  via email DM on Instagram or Twitter to @healthhats Credits The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute®  (PCORI®), its Board of Governors or Methodology Committee. Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion Sponsored by Abridge Inspired by and grateful to Adrian Gropper, Janice McCallum, Michelle Lenox, Amy Price, Ginny Meadows, Lauren McCormack, Glyn Elwyn, Gregory Makoul, Z Colette Edwards Links Linkedin:  https://www.linkedin.com/in/talya-miron-shatz/ Twitter: @TalyaMironShatz Website Buy Your Life Depends On It Deliberation before determination: the definition and evaluation of good decision making https://pubmed.ncbi.nlm.nih.gov/22618581/. Shared Decision Making: A Model for Clinical Practice Nobel Prize Winner Richard Thaler Z Colette Edwards Related podcasts Health Hats episodes about Clinical Decision Support About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once.  I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare.  Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge.  Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements.  Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines. The Show Proem The COVID pandemic highlights the impact of our choices about health and habits on ourselves and each other as well as the impact of others’ choices on us. Think crowding, masking, vaccinations, collaborative problem-solving. Our lives depend on the choices we and others make. Sometimes our choices have little impact; rather, policy, employers, community culture, work and home settings, travel have a more significant effect and seem remote from our personal choices. Clearly, it’s complicated. Introducing Dr. Talya Miron-Shatz My guest, Dr. Talya Miron-Shatz, a key note speaker, consultant, and researcher at the intersection of medicine and behavioral economics wrote a book, Your Life Depends on It: What You Can Do to Make Better Choices About Your Health that was just published. She is a visiting researcher at the University of Cambridge. Dr. Miron-Shatz was Nobel Prize winner Daniel Kahneman’s post-doc at Princeton University, and a lecturer at Wharton, the University of Pennsylvania. She is CEO of CureMyWay, an international health consulting firm whose clients include Johnson & Johnson, Pfizer, and Samsung. Health Hats: Thanks for joining me. It’s lovely to see you. And I appreciate that you’re on the other side of the world. I think it’s amazing that I saw you not that long ago. Talya Miron Shatz: Yeah. It was fun. It was such a fun time being at the health conference, and it’s almost like we got so used to zoom, and you think you don’t need to see people in person, and then you see them in person. It’s great. Health Hats: It is great. All right. So, thanks for joining me, joining us. I’ve been looking forward to this conversation for months. I love your book. Your life depends on it. What you can do to make better choices about your health. I will put links to the book in the show notes so people can check it out. I’d like to start with, when did you first realize that health was fragile? Talya Miron Shatz: I think if I can go politician on you, Danny, and just change the question, I guess for me, I always realized health was fragile because my mom had huge eye problems when I was like in sixth or seventh grade. No, when I was six or seven, not in sixth or seventh grade, I was little, and she was slowly getting cataracts and could barely see. Then she had an operation. She was very fragile. Like she could only walk around very slowly. And at the same time, there was a movie about a woman going blind. So, I would practice, I had been blind, like just in case, can it seem to very tangible option? So that’s about fragility and vulnerability, but I guess the way I want it to change the question is to change it to what I do. And I’m a psychology professor, and I studied medical decision-making. So, I’m a full professor in Israel. I’m a visiting researcher with the University of Cambridge. There’s a lot of research that I do. And I work with companies and startups, pharma and advertisers, and whatnot on medical decision-making. Genetic counseling and medical decision-making Talya Miron Shatz: But the reason why I found medical decision-making so fascinating was that I sat in on a genetic consultation. So, it wasn’t mine. I was just sitting in because I was invited to teach at the medical school to teach genetic counseling students. I was a Ph.D. student at the time, and I said, okay, but I already have three kids, and I never had genetic counseling. What does it look like? And I sat in on a consultation. So, on one side of the table was a great genetic counselor with who I’m still friends. Like I spoke to her today. It’s maybe 17 years after that first encounter. And she’s great. She’s very smart. She’s very knowledgeable, and she’s very personable, patient, compassionate, everything perfect. On the other side of the table was a couple who couldn’t hear well. They couldn’t hear at all. And they had an interpreter with them, and they had her little boy with, and it was a small room, and it was crowded. Even more, crowded when we started talking about genes and chromosomes. It became packed, and I could see that it was puzzled and hadn’t left me. The way that you can have the best professional with the best intentions and the most knowledge and the most patients and people who need to listen and understand and process what they’re being told under less-than-ideal circumstances because they come to ask about their pregnancy, and they have questions. And it’s loaded with emotions, and they didn’t even have a decision to make. They just needed the information. And when they left, I thought, what would they remember? What will they make of it when their family asks? So, what do they say? What does she say? What will they know? And that’s when I understood that it’s just difficult, even under the best of circumstances, and we don’t always benefit from the best circumstance. Personal goals, exploration, universal truths, and decision-making Health Hats: Yeah. When I think about decision-making for myself and my health, I think about what I want from life. First, do you think that perception that I have is true, and how can that be easier? And in my experience, that’s a tricky question for people to answer and not just lay people, everybody, professionals as well, doctors, nurses. It doesn’t seem like it’s a way people often think, or there are large groups of people that, that is a foreign way for people to think, what do they want from life? But if it’s true, that’s an important part of making decisions. Talya Miron Shatz: My, you have big questions. I think it’s true for you. I think it’s very true for you. I believe some things are universally true, and I will fight for them. And one of these things is that people should receive information that they can understand. This is universally true. Okay. Now they can decide. They can say I don’t care about your stupid information. And that’s fine because that’s how they want to decide. They can say that I will read the New England Journal of Medicine article, and I don’t need your information. They can do whatever they want, but they should be served information that is understandable and makes sense to them that they have enough time to decide. That’s those things. That’s universal for me. That is crucial. I’m a psychologist. I have a Ph.D. in psychology, not a therapist. I studied decision-making. So, when people spoke to me about ethics, I would say no, that’s really outside my realm. But then I realized medical decision-making is riddled with ethical choices. I choose. And my choice is that I’m talking about how people should be served information and what decision processes should look like, but not the outcome. Now how anyone constructs the decision-making process is up to them. You have a very interesting way of doing it, which is true for you. Some people will be stumped when you ask them, what’s important for you in life? They’ll say I don’t know my family, my health, making enough money, watching a game, having a beer, it runs the gamut. And I just did a study with leukemia patients and their caregivers. So, some of the patients were acute, had acute leukemia. Others had chronic leukemia, and you could see that between them and their caregivers in terms of what’s important and how much money should we spend on treatments? And should we always continue regardless of outcomes, et cetera? So, it seems that there is no answer. And that the answer might shift for people at certain points in their lives. But I think one thing that is also universally true and I’m adamant that people should decide however they want. So, I have a paper that’s one of my best-selling papers, which of course, I don’t get any money for. But it’s about deliberate. It’s a scale that I built with Dr. Glyn Elwyn from Dartmouth. He’s an MD, one of the biggest names in shared decision-making. And we built the scale to rate the deliberation process, as in, how are people thinking, how are they making a choice? And we completely removed the outcome from the equation. I don’t care what you choose because maybe you chose something I would never choose. And who cares because you’re not me. And maybe you chose the dumbest thing in my mind, or your doctor says, what are you doing? This is it doesn’t make sense, but it works out. Or maybe you choose the right kind of surgery, and it’s perfect with God forbid it gets infected. Let’s take the outcome out of the equation, and let’s just have a good decision-making process, and anyone can choose any whichever way they want because, thankfully, it’s still a free country, though. The only thing is you must bear the consequences, and you should know what the consequences are. Consequences, risks, benefits, and alternatives Health Hats: Consequences. Yeah. The consequences. There are the consequences that are physical mental, and then there are life consequences. So, when a clinician collaborates with somebody making decisions about their health or medical care. How prepared are clinicians to understand what might be consequences? I’m like drawing a parallel or a line between them. People should be that people should receive information about their choices in a way that they can understand. And if part of making the choices are consequences expected and unexpected, the. The professional will understand consequences that are physical, mental, behavioral, but not life for that person. Talya Miron Shatz: What do you mean by life Health Hats: Meaning childcare, transportation, keeping their job, their marriage, other priorities to them, other important things in their lives. So, consequences aren’t just unintended, physical and mental consequences, but there are other consequences. That’s a hard conversation to have when you’re not familiar with the person’s culture or environment. Am I making sense? Talya Miron Shatz: You are. Yes. I think these are two very different perspectives. The professional’s perspective will be to say, for example, that I’m thinking about knee surgery because a friend of mine was supposed to have knee surgery. And she said, she asked the set of questions, and I’ll get to your answer in a minute. I’m not dodging it. It’s a long-winded way of getting. It’s an important question. She asked a set of questions that I always recommend asking. I called them to ask about what matters, and those are, what are the risks? What are the benefits, how many people will enjoy the benefits, and the alternatives? And the risk was you’re going to be immobile for six weeks. What are the benefits? You will have a repaired knee, which happens for about 50% of people. Not amazing, but that’s what we’ve got and what are the alternatives? And we talk a lot about patient empowerment, and I think people can be empowered simply by knowing that it is fine to ask about alternatives. It’s not disrespectful. It’s within your realm. It’s within your permission, if you will. It doesn’t undermine the doctor’s authority. And apparently, she learned that the old alternative was physical theater. Standard physical therapy, difficult physical therapy, which the doctor said most people just couldn’t stick with it. It’s too hard for them. And she said I’m not most people. And she isn’t. She’s like she did it. By asking about an alternative to surgery and learning that it was physical therapy, she could say, this is what I choose. Now the doctors don’t know her. So, the doctor doesn’t know that being immobile is torture for her being immobile means not going to yoga because she adores yoga. The doctor doesn’t know that, but he gave her enough information to tell that she could do it. And the doctor doesn’t know that she has a car or that she’s a university professor. So, she has a lot of flexibility with her. She doesn’t have small children. So, it’s fine for her to go to physical therapy. She doesn’t have to be in a factory from 7:00 AM till 7:00 PM and then takes two buses home. The doctor doesn’t know that he gave her enough information to make the implications. And for someone else, the same information could have led to a completely different conclusion, but she had enough to go by to do this translation for herself and say, this is what it means. Decisions with family caregivers Health Hats: Okay. I want to pull a different thread from a few minutes ago about the family caregiver and their role in decision-making. And it seems to me that the role can either be helpful or complicated or both. So, when you do your studying of decision-making, how do you figure in, or how do you deal with the factor of the family care partner or whatever you want to call it. Somebody who influences the decision or is impacted by the decision in their lives. Not just the person who’s not feeling well. Talya Miron Shatz: I think it’s a very important, even crucial, often grueling role, the caregiver role. I did one study with caregivers, but I’ll talk about it more in the context of the end of life in a minute. So, the study I did was with leukemia patients and their caregivers. And you could see the priorities were a little bit different. You could see that with the acute patients more than with the chronic patients. There was an understanding that both the patient and the caregiver have a role, have a meaningful role where the family has a meaningful role in decision-making. It’s not something that people do alone. In fact, a lot of the workaround shared decision-making involves a dyad of the person and the doctor, but the person often doesn’t come there alone. And you’re talking about consequences. The consequences apply to the patient but also to the caregiver. Going back to my friend. If she’s immobile, will someone be able to do the grocery shopping, deliver or cook, or if there are small children, take care of them or drive her around? These are things where the patient can make a choice, and it also influences other people. So that’s not just a dyad. That’s the person, the caregiver, and there are ripples. There are multiple ripples. And that needs to be considered. I think in the context, for example, in the context of, and that epitomizes end-of-life conversations. It seems that everyone avoids stepping on everyone else’s toes, just having these conversations, like the plague. And when I give talks, they sometimes say, you have something to say to you, and I’m sorry, but that’s, we’re all going to die. And that’s a fact, but which we don’t like to talk about. and of all things when people are sick and when people have a poor diagnosis, their family doesn’t want to talk to them about it is if not talking, we’ll just push away any grim events that might happen? The patients don’t want to talk about it because it depresses their families. So, everyone is worried about not just everyone else’s health but also about their emotions. And that’s hard to just one demonstration of what it’s like to be both a patient and a caregiver. And the fact that many patients don’t just care about themselves and getting better. They also care about the people who care for them because they love them. They appreciate them. So, it’s complicated. As you said, it is multiple things. Yeah, it is multiple things, I think, to not acknowledge that is to pretend. And I don’t like pretending. We are often pushed towards a rosy prospect of things in health, and I’m an optimist, but I’m also a realist. I don’t like to live under any kind of tyranny. Also, the tyranny of positive thinking. Sometimes it’s fine to say I feel bad it sucks. Cost of decisions Health Hats: It sucks. Yeah. So, another complicated feature of decision-making is the cost, like monetary cost. And there are different kinds of monetary costs, and for people, it’s an out-of-pocket expense. Back to the caregiver, it’s the cost of the caregiver’s career or the caregiver’s health or the cost of transportation, the cost of whatever. When you are studying this studying decision-making how does the variation and people’s willingness, comfort with, understanding of cost, whether they’re the doctor, the patient, the caregiver, how does that figure in when people are making decisions, have you found in your work? Talya Miron Shatz: So, I’m giving a talk at a business school in two days, and I’ll be talking about fertility treatments and the cost thereof. And I’m talking about them in a place where treatments are presumably free, and they are free, not just presumably free. There’s a lot of complementary medicine and sperm donations and private consultations, and a lot of money is involved. And that’s one of the only studies where I asked women because I was studying women about their stopping rule. After all, they studied women from age 43 to 45. That’s an age where your prospects are not very good for fertility treatments. And I asked them a bunch of questions about information, et cetera. And I also asked how much money did you spend so far? And is there a limit to the amount of money you’re willing to spend? And then, you go in. It’s to make a very crass comparison. You go to the mall; you don’t just bring all your credit cards; I hope and say I’m just going to spend until the mall closes. You say, yeah, I’m going Christmas shopping. It’s almost Christmas. I want to spend $300 on presents or five or whatever limit you set. But going into fertility treatments, we asked them, is there a limit? Nope. Half of them said I didn’t think about it. Wow. And yeah. And the other half said, no, there’s no limit. And they had spent Health Hats: Half said there is no limit, and half said they didn’t think about it? Talya Miron Shatz: Yes. Wow. Wow. I know what the finding is. It’s very similar to, is there a limit to the number of IVF cycles you’re willing to have? I didn’t think about it or no; there was no limit. Now, these things are torturous. It’s not fun. And yet they continue. So herewith the money, they did not set a limit. And I have a hypothesis. What happened with the fertility treatment is Nobel prize winner Richard Thaler, who defined and created behavioral economics; he calls it sacred values. So sacred values are things that you can’t put a dollar sign-on. And I’ll give a sports example. You root for the Rangers, and then they lose. If you had any sense, you would stop rooting for them; you would start rooting for the winning team. But no, you go home super bummed. Now, what is up with that? The reason is that whatever team is the Rangers or the Knicks or whoever you’re for, that’s a sacred value for you. It’s not fungible. You can’t replace them with anything else. You’re not going to any calculation now of what is better, you say, they’re my team for better and worse. And with fertility treatments, the sacred value is I want to have a baby, and it’s going to be expensive. I don’t care. Why are you talking to me about money? I don’t care about money. I want to have a baby. In these contexts, and the context of cancer care, et cetera, people don’t think about money at all. But they believe that in other domains, they do. And over time, they do. And sometimes, at the beginning of a medical condition, they take the approach of I’ll do whatever, and I’ll spend whatever. And sometimes, they realize that the fact that they’re not calculating is not sustainable, and they must make changes, but it’s not the first thing that comes to mind. Health Hats: I know I think about not wanting to be a burden to my family. So that burden can be how much care I need, personal care, and what we can afford. One of the infusions I have is it’s a hundred thousand dollars a dose and how, yeah. At one point, I had to pay $75, and the insurance paid the rest, and then it changed to, it would cost me 20%. That was a copay of 20%. And I was like forget it. There’s no way I forget it because there was no way we could have afforded it, but still, even if it was less, there’s a limit because then, there’d be, I’d have to borrow money from people. My wife might end up being in debt, so there are those factors. Talya Miron Shatz: Can I just say something about the example. I think between $75 and $20,000. Yeah. It’s obvious. That $20,000 is prohibitive. It’s also not lifesaving. It’s not like you have to take it right now. It’s like you’re allergic to bees, and the epinephrine shot is $20,000, and without it, the person’s going to. You would spend that money. Health Hats: Yes. Talya Miron Shatz: It’s like it’s clear cut. And those situations, it’s clear cut. It’s the in-betweens that are more complicated. And I think you made a very good point before with the career, caregiving burden, et cetera. These things don’t always come with a dollar. It’s a behind-the-scenes dollar sign. You don’t see it. Nobody says for today’s caregiving session; you have to pay. I helped my mom. She has a caregiver who has Sunday off. So, on Sundays, I’m on shower duty. I must stand by my mom, and she takes a shower, and then I put her robe on, and she’s cute. And I sit with her and whatever. So, these are two hours when I’m not working. I don’t charge my mom, not crazy or nasty. I would do anything for my mom. But what if I had to give up work for that as it happens? I’m an academic; I didn’t teach at that time. It’s fine. What if you have to get off work? What if it’s even more subtle in that you don’t take the better earning job. Cause it’s less flexible. It’s hard to put the dollars, and that is hard. Now a word about our sponsor, ABRIDGE. Use Abridge to record your doctor’s visit. Push the big pink button and record the conversation. Read the transcript or listen to clips when you get home. Check out the app at abridge.com or download it on the Apple App Store or Google Play Store. Record your health care conversations. Let me know how it went!”  COVID, vacation, depression Talya Miron Shatz: And I’m glad you mentioned vacation, and I’m going to connect this with COVID. How about that? So, we all know. And mostly when COVID started, we all knew how many people died of COVID. How many people had COVID, how many were in the hospital with COVID, and what we never saw on TV was how many people were depressed because of COVID, right? Felt locked at home. They missed their family, or just couldn’t go out or were at home in problematic family situations; those are costs to mental health that occurred. Yeah, in a big way. If you read the studies, young people who had suicidal thoughts reverted to drug abuse, substance abuse, alcohol, et cetera. And you didn’t see that on TV. You couldn’t count that, but it was there. And that’s something to consider when someone doesn’t take a vacation because they don’t have the money or they’re caregiving, et cetera it has an effect. Tracking decisions and outcomes over time Health Hats: Yeah. And so, it’s hard. I guess the reason I bring it up is that. The whole thesis, it seems of this conversation, is that decision-making is complicated, and it’s complicated with the stuff, and it’s complicated with the stuff you don’t know. Anyway, I want to hit one more topic. So, I want to get into it. So, you and I have had this preliminary conversation. So let me introduce it briefly for our listeners and readers. We are always making decisions about our health, and we make decisions, and we could decide to do a, B, C, D E, or to do nothing, which is a decision. And when scientists study decision-making, it seems that they’re studying it in somewhat limited circumstances, whether it’s the populations, the settings, the timeframe. And I just have this niggling for years. If we say in a study that a is more likely to be effective than B. And so, then that becomes part of a clinical guideline. It becomes part of the culture of recommendations or the regulations, but we don’t keep saying well, does it? No matter what, nothing is absolute; it works for some, it’s true for some people, and it’s not true for others, but we don’t do that. Longitudinal, let’s keep seeing here’s a decision was made. Now let’s keep tracking outcomes as more and more people make those decisions. So, from your point of view, as a decision scientist what do you think about that idea of keeping on studying it and continually learning the outcomes of decisions? Talya Miron Shatz: I think it’s a wonderful idea. I think it’s done. In some places, it’s done. So, Israel, for example, is one place where it happens. Not because they’re keen on studying, just because everyone has a unique identifier. People stay with their HMOs for decades. You’re incredibly unlikely to switch an HMO in Israel if you switch once it’s okay. If you switch twice. It’s what is wrong with this person? They’re flaky. You can’t trust them. So, you stay with your HMO for decades. They have a lot of information about you. They know everything; they know your blood work. They can track that. So, they can do longitudinal studies using big data because they have the big data, and that’s yes. That’s the bright side of it. So, you talk about decisions, and that’s where it gets a little murky. So basically, I can say that out of a hundred thousand people who have prescribed something, I’d say atrial fibrillation is a scenario that I worked on a lot. So, a hundred thousand people were prescribed medication. They persisted with it for an X amount of time. And how do we know that they persisted because they kept filling their prescriptions? Now, I don’t know if they filled their prescription and gave them medication to their lover or never took it. I don’t know where it took. I just skipped the weekends because they didn’t feel like it. I have no idea. So, I might; my knowledge is limited. And in one of my webinars, the head of health in IBM Research participated. She was in the audience when someone asked the question, and I said, you are better equipped to answer it. Why don’t you? And she said we don’t know the behavioral factors. So, if you’re talking about these hundred thousand people, did they adhere to their medication? We know, but we know. Health Hats: It’s a proxy Talya Miron Shatz: Precisely. And I don’t know much about their lifestyle. It’s not necessarily captured. Do they exercise a day, not exercise? What do they eat? How high is their stress level? So, a lot of information is just not captured and will probably never be captured, at least not in a centralized way. Health Hats: That’s for Israel, where there’s some central data. As opposed to the United States, where everything is just incredibly fragmented. Yes. Talya Miron Shatz: Exactly. And there was a study where they wanted to recruit a million people. They probably did attract their health. That’s great, but that’s a million people out of 315 million Americans. It’s less than 1%, and the rarer the condition, the less likely you are to find a person with that condition and that data set. And it’s also volunteer. You have to volunteer the information as opposed to people, just researchers, just going in a de-identified manner and reading my health record and saying, oh, this woman has been on this since then. And whatever. And that’s just an easier way to collect data, and that’s, it connects with everything. It connects with how doctors need to build information systems because doctors like to save cognitive effort. It connects with how digital health needs to be served to people. To users, the easier, the seamless, the better, ideally with some emotional component that motivates them. That’s something that I’ve been doing for a very long time. And I don’t think the need for this will go away anytime soon. So, if it’s easy, it will be captured and used if it’s seamless better. And if not, it’s going to be difficult. Action, implementation, rather than a new study Health Hats: Okay. What you’re saying is discouraging because I have this idealistic pipe dream even in the best of circumstances. It’s way complicated. But suppose you were to think about the germ of possibility in this complicated, unlikely whatever this is. In that case, I’m proposing what is if I wanted to hook on something smaller and more possible that would have value to people who make decisions. Like, better understanding the disparities or whatever, I don’t know. What’s a germ of possibility in this? Talya Miron Shatz: I think there’s already a lot of knowledge. Since you mentioned disparities, I’m doing a webinar on disparities. It doesn’t sound like it’s on disparities, but it is because we call it, and I’m doing with someone from Humana, an MD from Humana, Z Colette Edwards and we call it, Why Can’t They Just Ask? And that’s about health disparities. It’s about less-educated people and those from a lower socioeconomic status. And they’re less likely to ask their doctor questions. The doctor says something, they say, okay, because they don’t want to feel dumb. They don’t want to admit that they don’t know. And you know what, it’s fine not to know. Not everybody knows everything. And you have the right to understand, even if you only finished elementary. It doesn’t matter, you’re a person, and you deserve to be healthy and informed. So, they don’t feel that they have this right. They don’t think it’s culturally appropriate for them to ask the doctor questions to waste their time. God forbid undermining their authority. So that’s a disparity. And you know what, Danny, it exists. We know that. We don’t need to run another study. And that’s the one reason I wrote my book, Your Life Depends on It. What you can do to make better choices about your health is because I figured there are many studies. Many things have already been studied, and we know the answer. What we’re not doing, though, is implementing the solution. Yeah, that’s where I wanted to be. I tried to put the knowledge out there. So, I don’t think we need to do more studies on health disparities. We need to take existing knowledge and say, here’s what happens. It’s not great. Not because I’m goody two shoes, and I want to pretend like I’m a nice person. But because this is hurting people’s health, it’s hurting the economy. It’s hurting ROI for health organizations, health care organizations, employers; that’s a lose-lose long, long chain of losses. So, let’s make a difference with the knowledge we already have. There’s plenty of it. Top three takeaways Health Hats: That’s so interesting. Okay. Let’s wrap up, and let’s wrap up with pick one. What should we have talked about that we didn’t, or what do you think the three most important takeaways have been in this conversation? Talya Miron Shatz: One is that making health decisions is complicated, and it’s complicated for everyone. That’s all, that’s a health decision—another takeaway. The health decisions don’t just happen between patients and their doctors, but rather a larger circle. And a third is that there is a lot of knowledge out there waiting to be implemented by healthcare executives, medical associations, et cetera. And, by patients. Show me not just a patient, a person. A person who doesn’t know that smoking is bad and physical activity is good. You’d be hard-pressed to find such a person right now. Does everyone who knows that act upon it? I don’t think so. So not knowing is not enough. We need motivation, and we need facilitation. We need all these things. So yeah. You said it was discouraging. It’s just realistic. You don’t have to study physical activity to know that it’s good or smoking, et cetera, alcohol abuse. It’s just really complicated. The way people behave. They don’t always behave in ways that are optimal for their health. They’re maximizing are their utilities are fine, to speak the behavioral economics lingo, or they just can’t do better by themselves, which is a shame. And that is a space where I think health and digital health still needs to grow. We are not there yet. We’re amazed by medical knowledge; we’re amazing with technology. We’re not amazing with the behavioral stuff. Not yet. Health Hats: If anything, we might be taking some steps back. Thank you. Thank you. I love talking to you; what a great opportunity this is Talya Miron Shatz: fantastic. Health Hats: Thank you. Talya Miron Shatz: Take care, Danny. Bye-bye.  Reflection When tackling something complex like medical/health decision-making you can occasionally see sunlight while also find yourself deeper in a thicket. I feel that way now. Where do I see sunlight? People should receive information they can understand. All decisions have consequences, predictable or not, expected or not, physical, mental, spiritual, and financial. Decisions involve, affect, more than the dyad of patient and clinician. It includes family, caregivers, neighbors, and co-workers. Where am I still in a thicket? Sometimes I want to lay down and give up – it’s too complicated. Sometimes the right decision seems so clear to me, has been thoroughly studied: Get exercise, get vaccinated, don’t smoke. But acting on decisions or knowledge is maddeningly difficult. Don’t people see what I see?  Well, of course not. How arrogant of me. Decisions involve power. Power is always messy. Even Israel with a common person identifier, can’t study the effects of decisions over time.  I thought it would be easier. Gosh, I’m just getting started.    
19 minutes | Jan 30, 2022
Camino de Santiago, Spain. Pilgrimage of sounds. #20 & 156
I found myself on a pilgrimage of sounds. Disabled. Left out. Mobile. Podcasting in Spain from my wheelchair in 2019. Portugal Camino next. Anything different? Buen Camino Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, hard-of-hearing or deaf? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on transcript) Proem.. 1 Eureka! It’s a Pilgrimage 02:21. 1 Sound sampler 03:08. 2 Missed sounds. Still a story. 04:33. 2 Travelogue 06:26. 2 Day 1 to 2 Madrid to Villafranca del Bierzo 06:44. 2 Day 2 to 4 Villafranca del Bierzo to Trabadelo to Herreras 08:41. 3 Handicapped. Mobility or language? 11:06. 3 Day 5-6 Herrerias and O’Cebreiro 12:55. 4 Left out 14:28. 4 Pilgrimage – handicaps, feeling left out 16:33. 4 Rooster crows 07:15. 5 Reflection 17:25  5 Links Camino de Santiago Camino de Santiago Forum Marly Camino Guided Tours Notes Grateful to and inspired by Linda DeRosa, Mary Lawler, Ann Boland, Mike DeRosa, Kate Higgins, Cynthia Meyer, Ed Lomotan Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Photo by Linda DeRosa About the Show Welcome to Health Hats, empowering people as they travel together toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once.  We will listen and learn about what it takes to adjust to life’s realities in healthcare’s Tower of Babel.  Let’s make some sense of all this. To subscribe go to the blog https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge.  Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements.  Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines. The Show Proem As I gear up for another international adventure, I feel my aging, disabled, optimistic, fearful white man of privilege self. Our insanely successful 2019 trip to the Spanish Camino opened my eyes even more to the possibilities of travel with disabilities. Our success as a travel team rested on our flexibility, compassion, and gratitude plus planning. Working with the Carly Camino Travel Agency we booked just barely accessible accommodations, drivers with translation apps so we could communicate, and GPS WhatsApp so drivers could find me when I got lost (twice).  ‘We see you, stay where you are, we’ll find you.’ My cronies and I have all struggled through ailments, surgeries, infections, and pain over the past three years, so realism tempers our optimism. This time we’re pooling resources for a support van available whenever we’re not in lodging. A theme of this reprised episode was feeling left out. Gratefully, feeling left out hasn’t lasted or resurfaced. Eureka! It’s a Pilgrimage I find myself on a pilgrimage. I thought I was tagging along with my wife’s hiking group through rural, Northern Spain as a disabled person. But one of our companions, Mary, has been talking about the pilgrimage that the Camino de Santiago has been for centuries and is for her. I didn’t take that in at first.  Since I can’t hike, I thought I’d focus on recording and podcasting the experience. I was especially drawn to environmental sounds in my preparation for the adventure. My ears have become more sensitive as I walk or motor around my hometown, Boston. More chirps, more barks, more chatter, more wind. Sound sampler David Bourne, from North Carolina, has been educating me on recording sounds around me. Headphones and a shotgun mic amplify those sounds. Woah! Listen to the range of sounds I’ve recorded. If you’re reading, now’s the time to listen. Urban sounds from a balcony outside the town square in Villafranca del Bierzo Rural sounds of a field with cows and their cowbells along a creek in Herrerias The sounds of my wheelchair as I drive on a paved street in Trabadelo. You can hear the whir of the chairs electric motor The sounds of my wheelchair driving on cobblestones in Sarria Missed sounds. Still a story. I’ve missed many sounds I wanted to record. I heard a rooster crowing. Took me 10 minutes to open the equipment bag, go outside, set up the equipment and start to record. I thought, “At least a rooster keeps crowing. I’ll get it.” But no, it stopped.  I recorded for 10 minutes, no crowing. But I heard my foot tapping, the elevator humming, dogs barking, the wind through the leaves… We kept chickens when we lived in West Virginia. My wife loved them. Messy, stupid animals to me. Not like bees.  I enjoyed keeping bees. But then I was the one that slaughtered the chickens.  I was an amateur butcher at best. Somebody had to do it. Can’t keep chickens and let them die of old age. Roosters are a hoot, though. Pompous, full of themselves, and useless – except for procreation and the morning alarm. Yet, see, even no sound has a sound story. Now a word about our sponsor, ABRIDGE. Use Abridge to record your doctor’s visit. Push the big pink button and record the conversation. Read the transcript or listen to clips when you get home. Check out the app at abridge.com or download it on the Apple App Store or Google Play Store. Record your health care conversations. Let me know how it went!”  Travelogue In case you think I’m not actually traveling.  Here are some clips of my travelogue. I felt so shy and hesitant just standing there speaking into my lapel. I should have pretended I’m on the subway talking into my cell phone. I know way more personal details about some people’s lives than I care to. Day 1 to 2 Madrid to Villafranca del Bierzo Day 1 on the Camino de Santiago was our flight from Boston to Madrid on Iberian Airlines.  I had an economy premium seat and my wife had an economy seat. I sprung for the more space and she didn’t. The more space is actually very nice. Usually I gate check my electric wheelchair and I retrieve it outside the plane. But today when we got to Madrid – no chair.  Turns out they baggage checked it. So, I have to go to baggage claim and be taken by an attendant in a wheelchair. It was 6 a.m. There really wasn’t enough staff and I ended up in a holding room with about eight other people in wheelchairs. We were dropped off in this holding room and we couldn’t go to baggage claim because you had to have an attendant to leave this holding room. I was in the holding room for about an hour and finally somebody came who spoke English. I was quite handicapped without being able to speak Spanish. I got my canes out and was able to walk unassisted to baggage claim where my wife had found my chair in a special area. I would rather have lost my luggage than my chair. We drove by taxi five hours to Villafranca del Bierzo. We spent two nights there seriously jet lagged. It’s six hours later here in Spain than in Boston. Day 2 to 4 Villafranca del Bierzo to Trabadelo to Herreras On day two we took a taxi to Ponferrada to see the castle there. This was a two-cane day, no chair.  Day three we went to Trabadelo and found a fabulous Auberge run by a Dutch expatriate from Rotterdam. She came to Spain with a fellow and settled in Trabadelo and runs a gastropub and hostel, el Puente Peregrino. Amazing food. The zucchini blue cheese soup is delicious and curry. Not standard Spanish fare. Day four – Herreras. This time I rode my electric wheelchair seven miles. I was able to go about 98% of it on my electric wheelchair. The route was mostly on paved roads. This was the only section so far of the hundred and twenty-mile walk that is suitable for a wheelchair.  98% meant that there was two percent I couldn’t go. A stretch down a steep slope of gravel underneath a highway, which I couldn’t take my wheelchair. A very nice man from Berlin helped us carry my wheelchair down this steep rocky path, but otherwise, we did very well. We walked with a guy from Montenegro. We met people from North Carolina. We walk the several small towns population 200 – 600 people.  I love that I can join my wife and friends, but frankly, I’m was bummed out that I couldn’t walk. I had to get out of my wheelchair several times to push it for a hundred meters or so to work out the cramps of sitting. I’m glad I’m not totally restricted to my chair. Everyone else is hot from walking and I’m cold from sitting. It’s between 50 and 60 degrees here. Handicapped. Mobility or language? A few of the places so far that we’ve been to are really wheelchair accessible. But no less than United States. There are many sidewalk cutouts, but not everywhere. The bathrooms are by far the hardest, then doorways, then space and room for the wheelchairs – very tight. It’s a good thing I can get out of my wheelchair and walk some. I carry my canes in my backpack, which is hooked to the back of my wheelchair. But really mobility is not my biggest handicapped. It’s actually the inability to speak Spanish.  Jose Luis my driver speaks no English. I speak no Spanish. But we’ve been communicating quite well using the iTranslate app. I enter something. He reads it. He enters something. I read it. Or he’s driving and we speak into the app. And then listen or we use a combination of both. We’ve talked about our families, the route, and our schedule. It really works amazingly well.  Why don’t we have iTranslate for health care? Doctors who can’t speak to nurses, who can’t speak to patients, who can’t speak to caregivers. This would be a great use of artificial intelligence. I think it’s less about the 1to and it’s more about the willingness to take the time and have the patience to try to communicate with each other. To look for something like iTranslate for healthcare. To use it to laugh at the foibles of poor communication or poor translation. We have so much we can do. Day 5-6 Herrerias and O’Cebreiro Much of the region we’re in looks like West Virginia. I used to live in West Virginia. It has steep hills with a creek in the middle. There are cows, sheep, and the occasional donkey. There are lots of dogs. There are lumber mills, hostels, and auberges that cost five to 15 euros per night with breakfast and bunk beds. We’re staying in very nice inns with individual bathrooms.  I’m not that rustic anymore, but I hitchhiked through Europe in the early 70s. I spent a night in an old school in Amsterdam with all of the non-load-bearing walls taken out. They had what looked like painted parking spaces to unroll your sleeping bag in and sleep with hundreds of other hikers, tourists, and vagabonds. Day five on the Camino adventure.  I’m at the Rural Nova Ruta in O’Cebriero.  It’s on the top, way on the top. It’s this stone village. It’s not a town. It’s not a city.  Seems like it’s mostly a beautiful old rustic village.  Everything’s downhill from here. It’s beautiful. Left out So, I got dropped off.  And I confess to feeling a little sorry for myself that I got left. They walked and I didn’t.  Goodness. My mom. was often worried about being left out. She wanted to do everything and it really bummed her out that she couldn’t do everything. I remember having this conversation with her. I don’t know, maybe I was in my 40s or so. I said, “Mom you’re always going to be left out of something.  You can only do one thing. There’s a hundred things you could do and so you’re left out of those 99 things that you decided not to do.” But you know, my mom was a Holocaust survivor. She was a German Jew. She spent five years in Netherlands in hiding. So, what did that mean? That meant that she was hidden in attics and basements sometimes in tables and chests and there was all this activity happening around her that she could hear. But she couldn’t partake and often she couldn’t see what was going on, but she could hear the sounds of people and the sounds of the street and the traffic.  But she couldn’t partake. So, she felt left out. I think that’s really a different kind of left out. And here I was in my arrogant 40’s telling her she would always be left out of something. Oh my God. Pilgrimage – handicaps, feeling left out A travelogue and a pilgrimage. The fear of travel with handicaps turned out completely unexpected. Language, not mobility. And my own arrogance led to my language handicap while goodwill, patience, and humor managed that. Yikes. I didn’t expect to feel so left out. Thanks to my mom for her perspective.  Too bad it took me all these years to feel compassion for her. I’m looking forward to the next leg of my pilgrimage of sound. Stay tuned. Rooster crows Reflection The Spanish Camino adventure opened my eyes to sound design. I recorded birds, insects, water, people chatting, vehicles, my chair motor and on cobblestones, cows and sheep, bells in towers. Amazing stuff. Yet, after the two Spanish Camino episodes in 2019, I didn’t do much with sound design other than expanding my use of music on this podcast, mostly with my cousin Joey van Leeuwen’s assistance.  I eagerly await the opportunity to record the sounds of our coastal trek. Hopefully, I can do more on the other side of Portugal.  I’m working on sponsoring a sound design mastermind group of podcasters and friends. Interested?  Let me know.  Should be fun.       ” width=”20″ height=”20″>
40 minutes | Jan 16, 2022
Sustained Community Engagement-Rousing, Nimble, Complex #155
The odyssey of sustained community engagement at Cambridge Health Alliance with Janice John and Jamila Xible. Cross-pollination of expertise and employment. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Please support my podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Introducing Jamila Xible and Janice John 01:28. 2 Communities served by CHA 04:57. 2 Most healthcare occurs upstream from hospitals and clinics 06:47. 3 Serving communities of immigrants 08:05. 3 Investing in community health workers 10:16. 4 Behavioral health community workers 13:09. 5 Hiring from within communities 15:31. 5 Overload of information accessing care 17:18. 6 Volunteer Health Advisors 21:03. 6 Nuances of culture 23:01. 7 Closing the gap for equitable care – a bit 25:04. 8 Outreach versus engagement 27:55. 8 Cultural humility 29:14. 8 Physician Assistant, Physician Associate 30:23. 9 Barometer for inclusion and engagement 32:59. 9 The complexities of community engagement 35:32. 10 Reflection 38:02  10 Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn  via email DM on Instagram or Twitter to @healthhats Credits The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute®  (PCORI®), its Board of Governors or Methodology Committee. Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion Inspiration from Ellen Schultz, Kirsten Meisinger, Michele Whitt, Lisa Masinter, James Harrison, Russell Bennett, Ben Hamlin, Regina Greer-Smith, Tania Dutta, Uma Kotagal, Neely Williams Sponsored by Abridge Links Cambridge Health Alliance CHA Facebook Page CHA Healthy Now Blog Link to cultural humility video https://www.youtube.com/watch?v=_Mbu8bvKb_U https://lownhospitalsindex.org/hospital/cambridge-health-alliance/ https://www.challiance.org/community-health/volunteer-health-advisor-program https://www.bhchp.org/. Boston Healthcare for the Homeless Related podcasts and blogs Community engagement episodes on Health Hats, the Podcast https://health-hats.com/pod150/ https://health-hats.com/minister-to-community-spirit/ https://health-hats.com/pod133/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines. The Show Proem Welcome to the eleventh episode in Health Hats’ community engagement series. I’m fascinated with communities that gather to solve a problem, their problem. I tune my ears to such communities and grab guests to join us and share. Less often, I discover institutions actively and sustainably (over years or decades) engaged with the communities they serve. What’s the difference – one time and sustained? One time is meaningful, significant, fulfilling, amazing. And hard to learn from and time-consuming to start. No rapid zero to 60 mph when you need it. Sustained engagement takes time to build an investment upfront and ongoing, but it’s available on demand. They’re different, with different results. One such institution sustaining community engagement is the Cambridge Health Alliance (CHA). Several episodes ago, we met Dr. Kirstin Meisinger, who recommended inviting Janice John and Jamila Xible to be our guests. Introducing Jamila Xible and Janice John  Health Hats: Jamila Xible, Director of Health Education and Access Programs at the Cambridge Health Alliance, is responsible for the oversight of several programs, including the Volunteer Health Advisors, Aging Wisely Everett, Senior Suicide Prevention, Women’s Health Network, and the Community Health Improvement Learning Institute, which regularly offers Community Health Worker training. Jamila holds a Master of Arts in Law and Diplomacy from Tufts University.    Janice John, PA, is a Medical Director at Cambridge Health Alliance, an experienced Community Health Clinician, Leader, and Educator with a passion for shaping our health care delivery system to improve the health of our communities. She’s a transformational leader, alliance builder, strategic thinker, creative problem solver, and collaborator.   Health Hats: Jamila and Janice, thank you for joining us today. I’m delighted. Could you guys introduce yourselves to our listeners and readers and tell us a bit of yourself and how you got to this place of investing in community engagement? Janice, you want to start. Janice John: Sure. I’m Janice John. I am a PA at the Cambridge Health Alliance. PA physician assistant and I work in primary care at CHA and have been with the organization for about a decade. And worked in homeless health care for nearly a decade before that. Working really in community medicine has been the entire arc of my career but often really from the perspective of a clinical provider. Health Hats: Okay. Jamila, tell us about yourself. Thank you. Jamila Xible: My name is Jamila Xible. I work as a Director of Health Education and Access at the Cambridge Health Alliance. It’s my road to where I am is not straight. I had a lot of detours, but my undergrad in social work in Brazil in a time when Brazil was opening from a military dictatorship, and there was a lot of community work being done. And I was deeply involved, and that stopped a little bit when I came here. But as I aged and matured, I came back to this work. Communities served by CHA Health Hats: I asked Janice and Jamila about the relationships with the communities CHA serves. Janice John: I started leading our COVID outpatient clinic in March 2020. Our clinic took care of patients upstream from the emergency room and evaluated patients through the first couple of weeks. Early in the pandemic, it was apparent that the communities hit the hardest were immigrant communities. And that there were some significant differences in who came into our clinic, our outpatient clinic, who called in with symptoms, wanting a test, et cetera, et cetera, and who ended up in the ER and needed hospitalization. So, people most likely to come in for upstream care had differences within sub-communities. It wasn’t something that we could figure out with a clinical lens. We needed to understand from the perspective of the communities. And because of that, I reached out to our community health improvement team. Jamila is our rock star for community engagement. And we brainstormed to try to think of ways to figure this out. And, but it was really seeing the discrepancies and disparities really in our communities that made us try to figure out what we were not doing, not seeing, not understanding. Most healthcare occurs upstream from hospitals and clinics 06:47 Health Hats: Real quick, say something briefly about upstream. What does that mean? Janice John: The way I think about care is that most health doesn’t happen in the health system. Most of health happens far before anyone walks in the doors. What influences health is a series of things that happen in life in built community, et cetera, et cetera. And when COVID was emerging, we had a playbook from China that focused on hospitalization. A lot of the national conversation influenced by what was happening in Italy was around ventilators. There were entire working groups trying to figure out who would get ventilators. And our system said we are an outpatient and community care delivery system. This is not necessarily the proper roadmap. This is not where we need to focus all of our energy. And we need to be thinking about what we do before the hospital. We anticipated that the ERs would get filled, that the hospitals would get filled, and we wanted to build something upstream. Serving communities of immigrants  Jamila Xible: I feel like I’m part of a community of immigrants. And when I look at what happened at CHA, those are the folks that are suffering right now. I’m so grateful that I can be involved in this work with people like Janice. Like our clinical team, we work in an organization where folks have that sense of mission. I talk to people from other hospitals, they ask, what the physicians, the what? The PCP is the what? They come with you to the community. Yes, they do research. Yeah, they do. So, it’s an environment. Everybody seems to be in the same boat. This is our mission. We’re going to try to improve what is going on out there. So, my role has evolved. Basically, we do a lot of community health worker training, and then we work with the community health workers that we trained in the community to improve the health, where they live and work. It evolved under COVID. Health education became all about COVID, and again, really lucky that I could involve our clinical teams, bring them out, and have their full support trying to engage people in discussions on things that would make them safer. And many times, that discussion was just about mask-wearing, about social distancing, and handwashing, but then it evolved into the vaccine work that we’re doing right now. And this equity work that a robust team of people all around Massachusetts is very invested in doing this equity work, which is tedious at times because we are the folks in between people who need and resources. And many times, those resources don’t come in the package that we want them to come. And many times, people that need those resources have a hard time accessing that. And part of my job is knocking down those barriers to access, understanding what they are, and knocking them down. Investing in community health workers  Health Hats: Wow. There’s a lot in what you’re saying there. Let me pick on something. So you were talking about community health workers. Are the community health workers employed by community organizations, by CHA? Do they work pro bono? What’s the array of arrangements that there are with community health workers? Jamila Xible: Right now, community health workers are an important, significant part of any health system around Massachusetts, perhaps about in the whole United States and in the world. You see them everywhere. We have employees that qualify under that umbrella of community health workers within the hospital walls and without and outside the hospital walls. So, for example, inside, we have patient navigators and patient resource coordinators. We have care partners. We have them tackling mental health. We have them connecting people to resources in many different, over 50 roles within a hospital wall. Pay them. Health Hats: Oh goodness, many different roles. Wow. Jamila Xible: Outside the hospital walls, we also have a number of community health workers. Our community health improvement department has about 70 people. Many of them in that role of health educators, patient navigators, you name it, but working outside, as Janice said, tackling social determinants of health. It’s not something that it’s there, and we can’t affect, but social determinants of health is the term commonly used. I don’t like that word determinants. I like to say social influencers because we can change them. Health Hats: So, CHA has made an investment in this that’s impressive. Jamila Xible: And Danny, just one thing, not CHA, the state, and it’s in the accountable care act. The role of community health workers is solid as part of the care team. This role of community health worker. So, it’s not only us, but it’s happening everywhere. Sorry. Health Hats: No, I appreciate that. But in my limited experience, I would say there’s what’s required, and then there’s what is done and what’s the spirit behind all that. Janice John: In our Instagram feed this morning. It was announced that CHA was named the number one hospital in Massachusetts for health equity and value by the Lown Institute. Health Hats: Congratulations. Behavioral health community workers  Janice John: To your point, I think that there is what is required. But that’s a different thing for figuring out how to make a system work more effectively, leverage resources, and utilize resources to bring the most value to the population. And Jamila talked about all the various roles or types of community health workers in Cambridge Health Alliance. One good example just to pivot away from COVID for just a second is within our behavior integrated behavioral health. So, our system lost a really large number of psychiatrists and needed to pivot some resources to inpatient services because of the mental health crisis. And we. Yeah, we’re struggling as a system to provide care to all who need it right now, like every other system pertaining to behavioral health. But one of the things that we’ve been working on for several years now is this primary care behavioral health integrated mental health care. And one of the critical parts of that is our behavioral health care partners. So, these are unlicensed mental health team members who can provide a great number of services in conjunction with the rest of the behavioral health team overseen by the rest of the behavioral health team. Still, allowing for the prescribers, allowing for the therapist to take care of the patients most in need and not every, not necessarily every single patient, some patients do well with a care partner and brief interventions and that kind of thing. And when you think about it from a community perspective, in a population health perspective, mental health care behavioral health care can feel intimidating. And there are lots of different perspectives within our immigrant communities about accessing care, mental health care, behavioral health care. And so, having this role doesn’t just allow for a different allocation of resources, but it also can be much more accessible to patients who may feel a little bit intimidated by doing therapy or seeking psychiatric care. Hiring from within communities  Health Hats: I have two questions. Pick one. And one of them is that it sounds like you hire for within, meaning you hire from the communities you serve so that commute so that the health workers are coming from those communities. I’d be interested in that. And the other thing, just to get it out there, is that you’re talking about the differing approaches that communities have to Mental health, behavioral health care. And I’d be interested in hearing about the range. So why don’t you pick one of those, Janice, and then we’ll let Jamila talk about the other. Sure. Janice John: So, as far as hiring from within our communities, I think that this is something that CHA for many years now has taken an institutional approach and has sought to hire from within the community, promote people from within our communities into leadership roles, and having more advanced roles. Take something like our medical assistants. Most of our medical assistants are bilingual, trilingual, are from our communities, and just have so much insight into the unique challenges that our communities, our teams, our patients face. But then, allowing them to potentially enter something like a care partner role or a leadership role or something like that. And with a lot of intentionality. And I think our HR department has done a pretty good job of this for quite some time. Overload of information accessing care 17:18 Health Hats: Oh, that’s great. So, Jamila, what about the range of approaches? The approach is probably not the right word, but the range of how different communities will be ready for access, stigma, w what is the range that you feel like your communities offer in terms of opportunity and challenges in accessing mental health and behavioral health care? Jamila Xible: Why don’t we talk about accessing anything at all? Many of the folks that we serve came to this country recently, and some came here like 30 years ago, but up to today, they still don’t speak English. So, understanding, like for you, Danny, to understand the healthcare system, it’s confusing. For me, I work in healthcare. When I look at my health insurance, what it covers, what it doesn’t, it’s very confusing. So now, imagine arriving in this land and having to learn everything. Language, places where you go shopping, what kind of products you buy, school, where your kids will go, vaccines you need for school or work, or whatever. So, all this stuff, it’s like an overload of information in folks’ minds. They don’t have time to think and do what it takes to access care and other resources. And what that means is understanding health insurance, especially for those that don’t have documentation of their immigration status in this country. So how what is accessible to them? For example, for folks that are coming from Brazil. In Brazil, if you get sick, you get the phone and call a doctor. And most likely, if you feel like my heart is aching, you will call a cardiologist. If you have stomach pain, you’re going to call a gastro person. Here we need to say no. There is a place you have to stop first, and that’s a primary care provider. You have to start there. That’s what opens the doors to everything, including mental health, cardiology. Then people usually ask me, but Jamila, how much does it cost if I just want to pay for a cardiologist? And it’s hard to explain that people won’t tell you that. People won’t tell you how much it costs until after you have that exam because they don’t know what they’re going to be, what your symptoms are, what kind of tests you’ll need. And so it’s tough for folks to understand that and plan. So, part of what we do as community health workers are explained and help folks navigate the system. And guess what, the emergency room is open for you. That’s not the optimal case if you don’t have a true emergency. So then making that distinction between what is urgent, what is an emergency, and what is just the regular maintenance. And then it comes that conversation on why it is so important to do that regular maintenance, but sometimes what I feel like across all the communities that we serve, people have so much more to deal with that they are functioning, they’re addressing emergencies. And if they don’t have an emergency medical situation, they will not go there. So, reaching out and bringing people in it’s it is what our goal is, our mission and our challenge, Health Hats: Yes. Yes. Yes. I’m just I’m processing. Volunteer Health Advisors  Jamila Xible: The cool thing is, Danny, we have this awesome program at community health. It’s called the Volunteer Health Advisors Program. So, every year we recruit about 25 to 30 people from the communities we serve that reflect that community. And we train them as community health workers. And after we teach them, they volunteer with us for 48 hours. Then what they do is they help us connect with communities. Some work with churches, some work with municipalities or CB community-based organizations, and they help us do the work we do for a year. And then after that, that also works as a connection for them to find jobs as community health workers. It’s an awesome little program. Janice John: And just to speak to that as a primary care clinician. I remember when this was pre-COVID, but I had a patient come into the office who was a new patient to CHA. She was new to the US and didn’t speak English yet. And was accompanied by someone, a VHA who I didn’t see the same language as her. So, it wasn’t acting as a translator at all. But there was enough cultural similarity that the patient could overcome her fears, partly just by having another woman there and having someone who could share some of her deepest fears with me as the provider. So, it also helped me as the provider to step back for a second and the kind of clinical space and think about the most important thing to this person at this moment in time. And that VHA was just so helpful in helping me prioritize and understanding, from the patient’s perspective, what was the most important? It was a beautiful moment. It’s a great program. Nuances of culture  Jamila Xible: And then you, let me just say, so when we go out there, and we tell folks you are safe here, you can come to CHA we’ll serve you. You come; you will find great doctors. You’ll find primary care providers. For me, it’s awesome to have Janice and her team, a lot of folks from different languages. So, I was talking about that idea of people coming into the hospital and meeting what we promise, which is a good provider. What Janice described right now was listening and trying to understand the culture and figure out how that affects treatment and that relationship. Health Hats: Yeah. Yeah. Those nuances of culture are so huge. Jamila Xible: And I feel like, in most traditional healthcare systems, you go to the doctor, and he has the power to tell you what to do. And many times, if the doctor comes from the same culture you come from, there’ll be more success even though you come from the same culture. The same culture doesn’t mean sameness. Many cultures, different individuals are multi-layered. But at CHA our doctors every day, our primary care providers every day, they see people very different from what they know. And I feel as an organization, that’s what separates us from many other healthcare systems in our area, in the country. I feel that our clinical team can do what Janice was saying right now, sit back and understand the needs and cultural factors that impact that care? Health Hats: You’re doing a lot. It’s impressive. What do you think to take it to another level? What do you mean? Closing the gap for equitable care – a bit  Janice John: I can speak to this a little bit, and I have a degree in healthcare delivery science. I think that our systems are, when we think about this from a change management perspective and the incentives involved in the system culture involved in the system, all these different pieces we are nationally in the US far from where we need to be, to provide equitable quality affordable health care to communities. So, we’re just we’re pretty far. And I think at CHA, we’ve closed the gap a little bit. Maybe a little bit more than a little bit. But I think to continue moving in the right direction. We need to think about how we are paying for health nationally. What we define as value and through whose lens and even in thinking about how we train healthcare providers teams, et cetera, right? We teach people in a pretty traumatizing system. And so that trauma can impact trust and connection with patients, especially from vulnerable communities. And I think that certainly thinking about incentives and how healthcare is paid for and who’s part of that design of healthcare whose voices get heard and how care gets delivered. And also, how are we training people at a very basic level because we have to change the culture, and the culture of health care is pretty, pretty deep. Health Hats: Oh yeah. Yeah. That would be an understatement. Wow. Now a word about our sponsor, ABRIDGE.   Use Abridge to record your doctor’s visit. Push the big pink button and record the conversation. Read the transcript or listen to clips when you get home. Check out the app at abridge.com or download it on the Apple App Store or Google Play Store. Record your health care conversations. Let me know how it went!”  Outreach versus engagement  Health Hats: So, what should we be talking about that? We haven’t we talked about? Jamila, do you want to start? Jamila Xible: I think maybe not explicitly. I don’t think we talked about the importance for healthcare institutions to engage communities in the process of care. And by engage, I don’t mean outreach. Reach out. There’s this idea that we do outreach, and outreach is a one-way thing. You tell people what to do. Engaging is bringing the community into what you’re doing and helping them design the services that we are providing. I think it’s a very powerful thing. And Janice and I took this participatory research collaboration as a powerful example of how we can continue doing that. The other thing that. When I say again what Janice was talking about the training. Cultural humility  Jamila Xible: We, the medical profession, are very hierarchical, which is the importance of training. I’m a trainer in cultural humility. And I feel like that can be applied in many ways to improve. Health Hats: A trainer in cultural humility. I love that. Jamila Xible: Yes. So cultural humility. Yeah. It’s a whole thing. It’s a concept developed by a couple of doctors in California. And I was very lucky that I was trained by one of those doctors that developed the concept. Health Hats: I’ll include something about cultural humility in the show notes. Next, Janice and I spoke about hierarchy in health delivery systems and the role of PAs, Physician Assistant, soon to be Physician Associate. What do PAs do? Physician Assistant, Physician Associate  Janice John: We deliver care. And, in a context so I, in addition to leading a clinical team, I also within the context of Cambridge Health Alliance, have been the chief PA for several years for primary care. And so, I’ve hired a team now of about 40 PAs. And many of them were born and raised in our communities, and the PA education was a much more accessible model to deliver care and not just culturally humble care, but culturally concordant care. And so, we have several Haitian PAs, and most of the greatest gaps in chronic disease management exist in our Haitian community. Several complex factors contribute to this. But the amount of trust between our community members and several of these Haitian Creole-speaking. But born and raised PAs from our communities, they’re able to bridge trust in a way that many of the rest of us may have a harder time doing. And so, I think that our profession, the profession of PA physician associates. What we have is our professional identity is as a team member. Teaming is 100% kind of our core identity. And I think that makes us ready to partner with patients, partner with communities. Partly because our training isn’t necessary to lead our training, it’s to partner with. And so, yes, hierarchy is prevalent in medicine. Unfortunately, it can be toxic and harmful at times and contribute to some of the traumatization and re-traumatization that exists both within teams and as it pertains to patient care. And it is also true that shifting our orientation to how we engage with patients moving from that hero model and to helper mode can be an incredible bridge. Barometer for inclusion and engagement 32:59 Health Hats: As I’ve said before, my barometer for community engagement considers severely marginalized communities – whatever that means – like those without brick-and-mortar homes, those living in jails and prisons, those with rare diseases, and children with disabilities. How do lessons learned, principles, and initiatives apply to these communities? In episode #150, Kirsten Meisinger, also from Cambridge Health Alliance, spoke about the public health foundation of CHA. I took the opportunity to ask Janice about CHA’s engagement with the homeless community. Janice John: I am not as connected to homeless care within Cambridge Health Alliance as I was when I was in Boston. Boston Healthcare for the Homeless is another incredible organization. And you should talk to team members from over there. They’re doing incredible work. And I think that the way they have approached care for, really quite a few decades at this point, is to design for the margins. And so, what they very much do, and they really have a lot figured out, right? So, they have consumer advisory boards. One of their consumer advisory board members is on their board. They do a lot within their delivery service delivery model to go to where the patients are. So, whether that is on a street and street medicine or to shelters drop-ins et cetera, their main hub is on Albany Street and Mass Ave in Boston, where just the greatest number of homeless patients at homeless people stay. There’s a shelter right behind. And then people, unfortunately, staying on the streets because that’s where we’re at right now with the closure of one of the biggest shelters in Boston. I think that the model of really going to where patients are and working to deliver care. I think that we talked about this a little bit before. What would we need to do? What we’re doing at CHA is if we could figure out how to transition more of our care to communities where community health workers are inviting clinical teams in that. I think that the payment model doesn’t align with that right now. And we’re a public system trying to stay afloat and continue to provide care. But I think that would be a total paradigm shift. The complexities of community engagement  Health Hats: Thank you. Jamila, I’ll give you the last word. If there were two things that you wanted listeners or readers to leave with from this conversation, what are those two? Jamila Xible: The work that we do is complex. We’re working with people; we’re working with care; we are working with the healthcare industry. I feel like we’ve put a lot of thought into it, and unfortunately, we still don’t see the ideal situation, right? Ideally, everybody would be as healthy as possible in resources would not be a problem. And I feel like many people think that there’ll be one answer to what we do. But it’s not. It’s complex. It involves a lot of professionals. It involves teams, and it’s difficult because you include teams from different areas. It’s complicated not only time personalities. It’s complicated. I think that’s what I feel like for us in the field, and I talk about me. Some days, I feel like it’s one step forward and two behind, but yeah, I feel lucky that we in Massachusetts. I feel lucky that the communities we serve have had very progressive voices, not only within our house health healthcare system but also in the community itself. And that interaction is precious. And that’s what keeps bringing us to innovation and to change, to keep putting us in the right direction. Health Hats: Thank you. Thank you both. This has been great. I appreciate it. Thank you so much. I have a feeling this is not the last time we’ll chat. Thank you for taking the time and sharing with us. Jamila Xible: Yeah. Thank you, Danny. Reflection  I learned much today about the fabric of community engagement.  I’m impressed with how Cambridge Health Alliance weaves the threads of community engagement with the warp of its public health mission. (Woven fabric lingo -warp and weave). I’d never heard of cultural humility. I love the two-way street of education and hiring for the diversity of community health workers and leaders. I’d expect a return on investment if the goal is community health and rapid response to crises. Do you know of other examples of sustained community engagement in healthcare research, delivery, entrepreneurship, or funding like CHA or PCORI? If you do, let me know and introduce me to someone who might be a guest on Health Hats, the Podcast. My next guest will be Talya Myron Schatz, a consultant, and researcher at the intersection of medicine and behavioral economics. We’ll speak about medical decision-making. Thanks for joining us. Onward.        
13 minutes | Jan 9, 2022
Sound and Noise. Senses and Voice. A Reprise. #19 & 154
Revisit 2019 travel to Spain with disabilities. A guest in other people’s lives. Differentiating between sound and noise. Heightening senses, expanding voice. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Please support my podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Taking stock 02:41. 1 A guest in other people’s lives 03:20. 1 Glad I’m not him 03:59. 2 Mobility enhancers rule! 05:25. 2 Gazing past our navels 08:04. 3 Differentiating sound and noise 10:02. 3 Reflection 11:17. 3 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn  via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Boston Drummer, Composer, Arranger Web/social media coach, Kayla Nelson Inspired by and grateful to Ann Boland, Linda and Mike DeRosa, Mary Lawler, Kate Higgins Sponsored by Abridge Links https://en.wikipedia.org/wiki/Camino_de_Santiago Maria Xenidou LinkedIn Impact Learning podcast Ame Sanders LinkedIn State of Inclusion website State of Inclusion Podcast The Podcasting Fellowship Related podcasts and blogs https://health-hats.com/camino-de-santiago-pilgrimage-of-sounds/ https://health-hats.com/days-6-12-camino-de-santiago-rejuvenated-inspired-not-yet-peaked/   About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines. The Show Proem In May 2019 my wife, a couple of friends, and I went to Spain to hike the Camino de Santiago pilgrimage. Full disclosure, they hiked I road in taxis, in my electric wheelchair, and with canes. Now the same crew and two others are planning a trip in April 2022 to hike the Portugal Camino, God willing, and the creek don’t rise. I thought I’d reprise the three episodes associated with the Spain adventure over the next couple of months to get myself back in the groove. Although the six of us have known each other for more than 55 years, have traveled together in various assortments and conditions including hitchhiking, foreign and domestic, we are all close to or over 70 with various aches, pains, and disabilities. Two years after the Spain Camino I am less mobile and less cocky, but all still rarin’ to go. Plus, if not now, when? This episode, #19, was first aired May 3rd, 2019, six months into my now three-year podcasting journey. No sponsor yet. Less music. Again, still risk-taking and curious. Let’s drop in on this flash from the past. Taking stock Hey there, glad you could join me. I’d like to pause and take stock of the past six months and look a bit to the future. We’re in the middle of a series with Young Adults with Complex Conditions Transitioning from Pediatric to Adult Medical Care. I’ve published 7 episodes in this series. I’m taking a brief break on the series and traveling to Spain. While we’re here together I’ll look back at the series, talk about Spain, and reflect on my patient/caregiver activism journey.  A guest in other people’s lives First, I cherish the opportunity to be part of intimate moments in people’s lives. In my career as a practicing nurse, I thought I had license to be nosey. I was a guest in other people’s lives. People are often amazing. They face complicated and frustrating challenges, jump hurdles, find help, and relieve boredom with humor. This inspires me. It fuels my fire. It gives me perspective. I’ve got it good. No, I’ve got it great. I’ll tell you a quick story here. Glad I’m not him When I was an aide at the Detroit Rehabilitation Institute, I was working the evening shift with a man in his 30’s who had had a gunshot injury to the neck. He was quadriplegic (no abilities below the neck). He was headed down the hall learning to navigate his motorized wheelchair with his mouth stick.  He couldn’t swivel his neck. Coming toward us was a man in his late 40’s who had had a severe stroke.  He was hemiplegic (no function on his left side). He was learning to mobilize in his wheelchair using his right arm and leg.  He was listing heavily to the side and visibly drooling. His 20 something wife dressed as for a dinner date was trailing behind looking thoroughly disgusted. My guy glanced over as he took his mouth from the joystick and said, “Glad I’m not him.” Gotta love perspective and appreciate what you do have. Anyway, is this series we’ve heard from a young adult in high school and in college and a parent. I have 2 interviews completed with people in their 30’s, already through their transition, as well as other people in professional support roles for those young adults. Mobility enhancers rule! OMG, I’m going to Spain for two weeks. I first went to Europe when I was 17. I hitchhiked from London to the Lake District, to Amsterdam, Paris, then Scandinavia. I went with my sister’s boyfriend who ditched me.  It was my first experience I was alone for 2.5 months. I had a great time. I only spoke English and met lots of people – native and fellow travelers. People took me into their groups, their homes, their lives. I mostly slept outdoors or in hostels. My wife and friends are veteran hikers who annually hike for a week or two – the Grand Canyon, Brice Canyon, and more.  This year it’s the Camino de Santiago pilgrimage in Spain. I don’t hike. I’ve always stayed behind.  But, Spain? Forget it. I’m going. Ed, a colleague at the Agency for Healthcare Research and Quality, introduced me to a travel agent in Madrid that he and his disabled father used for the hike a couple of years ago. This agent took my wife’s hiking itinerary and booked us wheelchair-accessible rooms and a driver for me. I’m ecstatic. Mobility enhancers rule!! I will be recording the trip and will share it here in future episodes. Stay tuned.   Now a word about our sponsor, ABRIDGE. Use Abridge to record your doctor’s visit. Push the big pink button and record the conversation. Read the transcript or listen to clips when you get home. Check out the app at abridge.com or download it on the Apple App Store or Google Play Store. Record your health care conversations. Let me know how it went!”  Gazing past our navels Next, what am I doing with my life? My mission is to empower people as they journey toward best health. Best health = peak capacity. Getting the most out of your genetics, your circumstances, and your abilities. Such wide-open possibilities and opportunities. My primary vehicle is my presence: my varied experience, my words, and my heart. As an extroverted person of privilege, I seek and share what works for people and what doesn’t. I find tables of healthcare governance, design, operations, and learning to sit at and I give voice while working to open doors for others to join or replace me. Others with different experiences and skills. These past couple of years I’ve focused on informed decision-making along the health journey, communication and dissemination of research and learning, pain management and reducing opioid use, and transitions of care for people with complex and chronic conditions. I’ll continue these efforts as I am able. Recently, I’ve been inspired to home in on health equity and building the capacity to learn and grow (inspired by my new podcasting friends and colleagues, Ame Saunders of State of Inclusion fame and Maria Xenidou of Impact Learning fame. You can find links to their podcasts and work in the show notes). Neither of these inspirations are health care focused. There’s a lot, we in healthcare can learn from gazing past our navels. Differentiating sound and noise This leads me, finally, to the experience of podcasting and learning the craft of podcasting.  Learning podcasting from Seth Godin and Alex DiPalma’s Podcasting Fellowship has supported me as I fine tune contributions to you. I have entered and enriched a world-wide nurturing, challenging, informative network of citizen experts. I’m already full of myself. This community appreciates me, cheerleads for me, seeks my wisdom, and gently points out where I can grow and improve. As some of my abilities diminish, my senses and voice expand. I can better differentiate sound and noise. I can use sound to listen more deeply. Just as two canes and an electric wheelchair maximize my mobility, the podcasting journey strengthens my voice and my presence.  Hang on! Reflection Well, this 2019 episode holds up pretty well in spite of some setbacks and bumps in the road. The charge I felt from completing our part of the Spanish Camino continues to this day. Elation that I could do it! I am not my disability. My disability gives a tint to my spectacles (both definitions of spectacles: drama and vision).  I better take my electric chair into the shop and make sure the nuts and bolts are tight. I no longer use canes, rather cane crutches. They take more space. I can’t walk as far and I can carry less. Adapting, adapting, adapting. Onward!          
47 minutes | Jan 2, 2022
Coaching for Peak Performance and Best Health – 2021 #153
Coaching, critical to my success in life, art, politics, advocacy. Still need to do my own work & make choices. Listen to a session with one of my coaches, Jan Oldenburg. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Please support my podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 The start of a business relationship 03:19. 2 Managing the swirl of me 05:50. 2 Coaching as a parent of a teen 07:21. 3 Advice, reflection, self-reflection, shades of grey 09:56. 3 First, build trust 11:02. 3 New position, new relationships, new levers 12:51. 4 Measurable outcomes of a strategic plan 16:24. 4 Changing roles at PCORI 17:02. 5 Vanilla management training. No nuts 20:08. 5 Clarifying personal mission, priorities, goals 24:26. 6 Staying in touch with, leveraging, advancing my constituency 26:27. 6 Capable of a delicate balance? 29:22. 7 Rare Disease as an inequity 30:15. 7 Keeping a pulse on Board effectiveness 32:23. 7 Leadership role on the Board 34:00. 8 The rest of my life 39:11. 9 Reflection 45:42. 10 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn  via email DM on Instagram or Twitter to @healthhats Credits The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute®  (PCORI®), its Board of Governors or Methodology Committee. Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion Rumours of Light image used by permission from Sue Heatherington @theWaterside Quiet Disruptors Inspired by and grateful to: Christine Goertz, Sharon Levine, Nakela Cook, Mike Herndon, Tanisha Carino, Kara Ayers, Connie Hwang, Luc Pelletier, Caryl Carpenter, Dorothy Cucinelli, Peter Tetrault, Tim Sullivan, Cynthia Meyer Sponsored by Abridge Links Related podcasts and blogs https://health-hats.com/pod141/ https://health-hats.com/chiropractic-operating-at-peak-performance/ https://health-hats.com/retirement-micro-stepping-with-mini-goals/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines. The Show Proem Want to be a fly on the wall of a year-end session with my professional coach, Jan Oldenburg? You can hear the good, the bad, and the ugly of my process to hone and strategize my professional and personal work. Why would I share a coaching session? Is this TMI (Too much information) too private? Does it make me vulnerable? In last week’s podcast, Matthew Hudson emphasized that you reveal something about yourself with the questions you ask, the problems you try to solve. Frankly, I am a bit anxious about sharing this, but you already know that I have little guile. I wear my life on my sleeve. I try not to say stuff I wouldn’t want on a billboard, but I’m not perfect at that. I reveal this session so you might sense how important coaching can be anytime in your life. Early in a career, as a leader, in health, art. I’ve been fortunate to have many coaches over the years, some paid, some pro-bono. Here are a few: Lynn Hubbard, Caryl Carpenter, Luc Pelletier, Dorothy Cuccinelli, Tim Sullivan, Peter Tetrault, and my current coaches, Jan Oldenburg, Jeff Harrington, and Kayla Nelson. As you’ll hear in the conversation with Jan, the output of coaching is up to me. I need to do the work. The choices are mine. This session is audio and video recorded with a transcript. You can find the video of this episode on YouTube with links on my website show notes. By the way, I thought this would be the least edited episode I’ve ever produced. True for the audio and video, not so much for the transcript.   The start of a business relationship Danny van Leeuwen: Jan Oldenburg, you know that I love you. Jan Oldenburg: I love you, too, Danny. Danny van Leeuwen: I appreciate our relationship as it’s developed over the years. At first, we were human curious, and then we started doing projects, sat on teams together, provided counsel to each other, and strategized in several different forums. It was always rich. When I was appointed to be on the PCORI Board of Governors, I was both full of myself enough and smart enough to know that I was the right person to be selected. I’m good at what I do. There was no way I would reach my potential without help and regular counsel. I immediately thought of you. Jan Oldenburg: I’m honored. Danny van Leeuwen: Thank you. So, we developed, and I insisted that you were very generous and excited and would have done this work pro bono for me, with me. I insisted that we have a business relationship. Part of that is because you got to walk the talk. We insist that people need to be paid for their work. And then there was another not so noble motivation: people with whom you have a business relationship will naturally be more responsive because they have a business relationship. I wanted that. So, we’ve met over fifteen months, pretty much monthly. And for me, I think the most important thing that’s happened is recognizing that I needed a filter between my brain and my mouth. Jan Oldenburg: I have that problem, too, actually. So, I really understand that. Managing the swirl of me Danny van Leeuwen: It’s good to say, okay, wait a minute, before I go off half-cocked, let’s just chew on this with somebody else, with Jan and clarify, clean it up, focus. Yeah. And so that’s good. And then I think it’s bringing all of the various threads that I’m involved in. So, just as I am not multiple sclerosis, I am not PCORI board. I am Danny van Leeuwen, and I have my fingers in many pies and am working on lining that stuff up with life pace. How much energy do I want to be putting out in total, in what buckets and what issues, and balancing all that? So, that’s my introduction. What I’d like to do here are two things. I would like to give you a chance to just talk about coaching and your feelings, approaches, and philosophy, and if you want to apply any of that, you can say anything – the good, bad, and the ugly about me is fine. And then let’s do a year in review. Coaching as a parent of a teen Jan Oldenburg: Perfect. Coaching is an interesting role for me. I hope this won’t offend you, but I think this applies whether it’s coaching you or coaching my adult children. One of the things that has been a critical lesson for me in building a relationship with my adult children is figuring out that they don’t want me to fix their problems. They want me to be a sounding board. And whatever advice I am trying to give them, it’s not the point of the exercise. The point is about helping them figure out what they want to do, their instincts, and where they want to go. I bring that, frankly, hard-won lesson, and they will tell you; I still struggle with it. But that’s one of the things I’ve tried to bring into this relationship that this isn’t about it. If I’m doing the job well, it’s not about collaborating to solve the problem. It’s really about my being an echo and a witness and a sounding board for you to figure out where you want to go. And that’s not the easiest part of it for me, quite honestly. Cause I also like to solve the same kinds of problems. But it has been wonderful for me to be able to watch you. And frankly, your focus and resilience in approaching who and what Danny is at this moment in time. And his roles and, if anything, helping you to hone that a little bit more or tune it up, or think about the ways, what you really want to accomplish in each of these forums and how you can best accomplish that. And I hope that’s how it’s felt to you. Advice, reflection, self-reflection, shades of grey Danny van Leeuwen: Yeah. It does. I think that being a reflection is important. So, hearing back, you do a lot of, ‘this is what I’m hearing you say,’ Sometimes it sounds right. And sometimes it doesn’t. I do like your opinions or advice, ‘if it were me, I would do, I might do this.’ I find that helpful. I, in no way, feel like that’s okay, then I’m going to do it. Cause I’m just not like that. I think we are people who are not black and white. We are people with many grays, and that gray is in and of itself gray has so many tones, and it’s where to try next. First, build trust Danny van Leeuwen: I feel like another thing that happens is the follow-up of okay, what did we start with? We started with trust, building trust with my new colleagues. I was in a new role. I wasn’t a merit reviewer. I wasn’t chairing or co-chairing an advisory panel. I was a board member, and that is a very different seat, and it has different power, obligations, and leavers. And I felt like that setting the first task of building trust. I remember the first management job I ever had was as a nurse manager of an ICU. I was an ER nurse and paramedic, and the ICU Manager left. The nurses came to me and knew me because of the advanced cardiac life support course I set up and taught. They came to me and said, we want you to be our manager. I’m like, you guys are crazy. I’ve never been a manager. I never worked in the ICU. Like how silly can that be? And they said we’ll teach you the ICU and you’ll be a fine manager. Jan Oldenburg: What a gift, actually. Danny van Leeuwen: So, I went to my boss, the chief nurse, and told her what happened. She said, ‘put your hat in the ring.’ So, I did, and I got the job, and oh my God, it was different. New position, new relationships, new levers Danny van Leeuwen: I’ll tell you two stories about how it was different. The first story was that within the first week, I realized that there were a lot of urinary tract infections amongst the staff. They weren’t taking a break to go to the toilet. There was one other male nurse, and the rest were females. And I was like, folks, we are smart people. We can figure out how to take breaks to go to the bathroom. I know we’re busy, but we are smart, and we can do this. And I went to my boss and said, I can’t believe this was my first management problem. Jan Oldenburg: No kidding. So many layers of kind of irony about that, right. Danny van Leeuwen: Yeah. And then the second was that I unilaterally ended visiting hours because it just made no sense to me that people, family members, could only come and see their family from seven to nine pm. Like where did that come from? But, being full of myself, I just did it, and, oh, they were so regretful that they had sponsored my elevation to this position. They thought I was nuts. And thankfully, the medical director was a hundred percent behind me. And my boss, who got lots of complaints, was very helpful strategizing, okay, now what are you going to do? How are you going to handle this? Do you want to back off and whatever? Which I didn’t. And we figured it out. Jan Oldenburg: Question for you, Danny. The next time you were presented with something similar where you knew there would be staff and patient impact in opposite directions, perhaps it happened right away. Of course. So how did you handle it? Danny van Leeuwen: I introduced it; I built the coalition. We figured out how to do it together. The next thing was that every physician had their own equipment. We had to maintain a stock of all sorts of brands of the same thing. When I got hired, the ICU was a loss leader. I said to the CEO, rather the chief nurse, which probably got me the job, that there is no way I am leading a loss leader unit. Forget it. It doesn’t have to be that way. So not only did we end up with one line of everything, but we also upgraded all the invasive technology, all the monitors, everything. And we broke even. That just took two years. Thankfully, I had a wonderful medical director because I couldn’t do it by myself, I couldn’t have done any of that, but anyway, I don’t know why we got down this thread. Measurable outcomes of a strategic plan Danny van Leeuwen: Okay. Those were some pretty formidable accomplishments: elimination of urinary tract infections, visiting hours, equipment and monitors, breaking even like that. I don’t know if I ever have had those kinds of outcomes. Those are dramatic. Jan Oldenburg: Those are dramatic. They’re clear, and they’re measurable. They are both human-centered and good for the organization. They hit all the chimes. Changing roles at PCORI Danny van Leeuwen: If I think about this first year of PCORI, being on the Board, I don’t know that I can say those kinds of things. On the other hand, I feel like we started with trust, and I think part of the trust I was managing was that I was no longer a detail person in the role. I was not that much of an opinion person. But the role is different, and I’m not in operations. And even though I had relationships with many people at PCORI through my doing. I did all sorts of reviews because being Health Hats, they could check off all kinds of boxes with me and, and depending on what they needed, I’ve worked across the continuum of care, behavioral health, physical health, so I have expertise in a lot so that they could use me a lot. I met many people. And then, I led an advisory panel for four years, and then I was on another one for a year. I knew a lot of people, and I had relationships with those people, and I would communicate with them very occasionally. It’s not like I worked in the same office with them. We spoke monthly or every couple of months – quite a bit. Being on a board is really different. So, I felt like the first part of trust was making it clear that I appreciate the dilemma, the change, the difference. I think some of the stuff we talked about was that I had this long-standing, regular communication with X. That’s just not that appropriate, maybe with her boss, maybe at the director level. Then just being free to have calls with the chair or the executive director and saying, this is interesting or concerning me. Here’s what I would do left to my own devices. And I just want to make sure. Let’s talk about the right way to do this in my role on the Board, that’s supportive of you and the staff and not becoming an additional problem. Vanilla management training. No nuts Jan Oldenburg: And I think we talked about that a lot. And I think it reflects on your story about going from being a staff nurse to being the manager. There are changes at each level along the way. So, I got a lot of management training when I first started, but I didn’t get training on how to be a middle manager, Danny van Leeuwen: which is like night and day difference. Jan Oldenburg: Even being a manager, it took a long time for me to start appreciating. That, that it wasn’t me getting the compliments. It was my staff getting the compliments, and I got the shit. Danny van Leeuwen: And that’s the job. You have to own it. Jan Oldenburg: And that’s the job. You have to figure out how to take pleasure from that. And then when you go from management at whatever level, to be on the Board, it’s the same kind of a sea change. And you have to do precisely those same kinds of thoughtful pondering about is this appropriate or not? How far, how deep can I go? How much of this is my role? And I think you did that thoughtfully and frankly enlisted the support—the rest of the Board, not just the leadership of the Board, but your colleagues. Danny van Leeuwen: Yeah. I had a mentor on the Board who I made good use of. I’m thinking about when I had a C-suite job, which is very different from middle management, which has served me well here because, frankly, I didn’t do too well in it. I had excellent staff, and the team did outstanding work, so the function that I was leading was mature. But dealing with the culture of the C’s, the various chiefs; oh, my goodness, I was not that good. Eventually, I got canned, which also made me realize how different I see the Board job. I served the Board, which taught me how much work it is for staff to serve a Board. I do know that I am heard on these board meetings. We’ve talked about this. Like, how do you recognize being heard? I feel like it isn’t two or three meetings, sometimes one where something I said or commented on has a life. Now I think some of it had been worked on for quite a while, but I speculate it gave it a little more juice. Now a word about our sponsor, ABRIDGE. Use Abridge to record your doctor’s visit. Push the big pink button and record the conversation. Read the transcript or listen to clips when you get home. Check out the app at abridge.com or download it on the Apple App Store or Google Play Store. Record your health care conversations. Let me know how it went!”  Clarifying personal mission, priorities, goals Jan Oldenburg: Well, Danny, one of the things I think I have been impressed with, as I have looked at, what you’ve been doing over the course of this time is that. You were very clear when you started about the set of goals you had for being on the Board, and you do a check-in with yourself very regularly. And with me on, how am I doing against those goals? How do I know if I’m doing enough, the right things, if they’re moving forward at an appropriate pace? I think you maintain that laser-like focus on what really matters about your role in this particular institution and what you want to make sure it happens as a result. And I strongly believe it’s one of the reasons you are effective and being heard. Danny van Leeuwen: If I were to think about those things, it has to do with equity in the research process. Not so much research on equity because other people are going to take care of that. Yes. To me, it’s that there’s equity in the research process. I think it’s. Community partnerships with researchers and the caregiver focus. It isn’t just patients; it’s patients and caregivers—attention to caregivers needs to be there. There isn’t a constituency for caregivers. There is for providers like there is for patients. Staying in touch with, leveraging, advancing my constituency Danny van Leeuwen: And then I think leveraging the existing PCORI resources, like the Ambassadors and the Advisory Panels, are diamonds for PCORI. And so, I attend as many of those as I can because I want them to know that somebody on the Board cares about what they’re doing is essential and a little tangent. So, one of the things that you and I talk about and appreciate in the coaching is that I’m really aware that I’m this person with limited mobility sitting in this tiny little eight-by-ten entryway of my flat, which has turned into my office. And I’m losing my train of thought. How, what are the levers, what do I have here? I feel like I have a friend who is completely chair bound has mostly mouth head neck, and she’s an engineer, and she designed her chair. She can do amazing stuff in her chair but take her out of the chair, and she’s a fish out of water. I don’t know if that’s an appropriate thing to say, but you get the meaning. I’m aware that I still have levers, and I feel like you have to use them. And one of them is an appreciation since I came up in PCORI as a patient-caregiver stakeholder. I know the benefit of the advisory panels and the ambassadors. And I think about how do I, we elevate that voice. I’m very fortunate; I think we’re very fortunate that the staff, the people who staff those panels, are pretty darn good at bringing the panels’ thoughts forward and incorporating that in their design thinking. They are focus groups. It’s very powerful. But I think, I don’t know, but I think the Board should just so appreciate this. I’m not sure they do. Capable of a delicate balance? Jan Oldenburg: But, yeah, I think it’s also one of the interesting things for you that you’ve managed well, but it’s also part of the value that you bring, which is for, first of all, the delicate balance is attending those meetings without being intrusive on their process without having… Danny van Leeuwen: Keeping my mouth shut. Jan Oldenburg: Getting in the way of work that they’re doing. I have a great appreciation for how difficult that can be. But you do it well. And then, part of your role is to amplify what they are doing and amplify it in the context of board decision-making and strategy. Rare Disease as an inequity Danny van Leeuwen: Exactly. An example from this week is the Rare Disease Advisory Panel. Somebody said, I think it was the co-chair, that rare disease is a community of disparity. I am not saying that right, but we tend to believe that there are disparities with people of color. There are disparities; inner city, homeless, rural, Native American when we think about the universe of disparities, so I don’t know the word for it. Communities of disparity are not the right words, but they want PCORI to be thinking about rare diseases as those kinds of communities. You and I have had conversations where I try to introduce that if we’re thinking about disparities and equity, my barometer is what are we doing with the homeless and the incarcerated populations? Like those are my barometers. I’m going to add rare diseases because of that discussion with the rare disease panel. I thought it was a brilliant frame. Jan Oldenburg: Yes. And it’s certainly clear that there are communities that have even between rare diseases. They’re in disparities in how much attention they get in whether they have a celebrity that’s helping them, helping raise awareness. How much money is devoted to it, and how much pharma thinks they can profit from it? All of those things create unevenness is right, Danny van Leeuwen: not a word, but right. Yeah. Whatever. It works. It might not pass in Scrabble, but it works. Keeping a pulse on Board effectiveness Danny van Leeuwen: The other thing, the last area I would say is that I, when you and I first met, we talked about trust and then, where I put my energy and that, the requirement was that I am one board committee. I’m on three, and one of them is governance, which is not considered a sexy committee, and there are only three board members on it. And I think it’s a vital committee. And I know you agree because one of the projects we did together was a governance project, and we learned quite a bit in that project. And so, I marry my quality management background and think that the board needs a dashboard of themselves, of their work, and a dashboard that’s related to the national priorities. At this point, I am ready to do the work to figure it out, to be part of figuring it out. And I say that because I’m a board member. And I say that because this has been my life work. So, I’m good at it. If I wasn’t a board member, you could hire me to do this, and you would get what you want. But I’m a board member. Leadership role on the Board Danny van Leeuwen: And so it’s I’m, I’m looking forward to a conversation scheduled next month with that I’m having with the board chair and co-chair, and I think they’re going around in there just having their periodic checking in which I appreciate that they’re doing. And, as you and I do, we think about what two things I want to accomplish in whatever meeting I’m prepping. And so this is one, and so everybody who’s listening, here’s the inside track on Danny’s coaching and thinking about PCORI and those of you who are in PCORI and thinking about this, you’re like, getting this view into Danny’s brain. Enjoy. I think about growing into more leadership roles on the PCORI Board, in a committee or workgroup, or whatever. I’m good at leading, love PCORI, and am committed to it. And I have the time. That’s a pretty nice offer. Jan Oldenburg: Where would you want to take it? Danny van Leeuwen: As when I’m first thinking about introducing myself. I have interests, which I try to be clear about. On the other hand, I tell the Board Chair and the Executive Director that I am their pawn. I’m a Renaissance person. I wear a lot of hats. I can do a lot of stuff. So, they should use me. That’s the most important thing. They should use me where they need me. Now, if they don’t know or want to think about it, I would like to be in a leadership role in the EDIC (the Engagement, Dissemination, and Implementation Committee) because that’s where my heart and soul are. That’s what I’m doing there. But the Board is rich with experience and skill and politic, so there’s not a wrong decision they can make. They have a lot of talent to use, and they know more about people’s experiences, time, and interests. I feel like my thing is just to be out there that I’m available. And here’s what I’m interested in. I can tell you have a thought here. Jan Oldenburg: One of the challenges of being a Renaissance person is that you can do nearly anything. Part of it is choosing where you want to expend your precious energy. You’re correct to say I am your agent; use me as you will. That has been important to building trust. But you also are a limited resource. And so, balancing that with thinking about how you have the impact that you want in the areas you wish to is delicate, but I think you’ve established enough trust that you can be at least somewhat more forceful about the places where you think you’d be more effective or where your goals most converged with the organization’s goals. Danny van Leeuwen: I’ll say two things to that. One of them is that if I were to have picked the three places to be, it would be the three places they put me. So that’s number one. So, kudos to the chair and co-chair. The second is that we’re in a place where I’m not sure where we’re going and how we’re reorganized. And what we’ll be like, permanent groups, what will be temporary workgroups. And I don’t know what they’re thinking about. I sit at the tables where strategy and governance come up. So, I have something to say about them, and I’m in touch, but I was going to say I’m not a decision-maker. But, I am. Anyway. The rest of my life Danny van Leeuwen: I want to shift before we end. I want to shift because one of the things that I think is important about you and my relationship as coach and coachee is because we don’t just talk about my career life. I’m surprised isn’t the right word. I’m grateful that you pretty much every time we talk, you make sure that there are a few minutes about the rest of my life. I have some consulting gigs, my podcast, and play music. And I’m a person with disabilities who has work to do to stay mobile. That’s a lot. I appreciate that you bring that up. One of the things that we’ve accomplished this year is that even though I went through a period of way more disability for two and a half months, being a mess and not being able to play music just killed me. No, it didn’t just kill me; it was really annoying. I had some hopeless moments. Jan Oldenburg: Yeah. It was heartbreaking. Danny van Leeuwen: To think that I wasn’t going to be able to play anymore. Oh man, that was a bitter pill, but now I am playing more than ever and loving it. I’ve made some adjustments. I have declined some work. One of the things we’ve talked about is the alignment of everything, and especially the alignment of PCORI, podcasting, and my consulting gigs. As a result, I’m doing very little pro bono work because, hey, people are paying me. I’m buying the equipment I need and having more time to play music, which I enjoy. Plus, my rule has always been when my wife says she wants to do something, the answer is always, ‘yes, give me a minute. I’ll be with you.’ That’s really important, a key to my happiness. Jan Oldenburg: I’m so glad that you brought this piece up, Danny, because one of the things that I have been, I have watched in awe I think this year is your personal resilience in the face of the challenges that your health has brought. And your continuing problem solving around how to do it, how to do it. And. Yeah, again, it comes in part with clarity of focus about what brings you joy and what you need to maintain that. But it’s also about the mindset that says I’ll take till I get this. And it’s, it’s part of the way that you are always positive. You’re always seeing a way through, or when you are feeling negative, you don’t let it be the permanent home you live in. But it’s also a mindset. That’s so much about possibilities and faith that there are possibilities, which then part help part link creates them. And that’s been a joy to watch and, and then honor to be a witness to because you are amazing. Danny van Leeuwen: Thank you. This went longer than I expected, but this is our usual session length, everybody. This is usual. We book an hour; we take an hour. We don’t do it that often. As I said, we do monthly, and it feels like enough. And it helps me. Again, continue focus. Self-reflection is so critical. My podcast episode with Matthew Hudson is about the embedded researcher. Matt ends with, I asked him, what do you want to leave people with? And he ends with the importance of self-reflection and then supporting each other with our blind spots and strengths. It’s brilliant, just brilliant. I love that ending. Anyway, Happy New Year. I am so grateful to you and our personal and business relationship. I look forward to the possibilities. I gave you no opportunity to talk about yourself. Someday we’ll do that. Jan Oldenburg: We’ll talk about legacy someday. Danny van Leeuwen: Okay. Good. I would do that. All right. I’m delighted that I don’t think I need to edit this. I think I will just do a one-minute introduction and an ending and just put it out there. The funnest thing we’ll be thinking about is the title. Jan Oldenburg: Oh yes, absolutely. And I’m dying to know what you end up with. So, it’s been my pleasure, Danny, not just this hour, but the time we spend together, it’s a high point of my month. Danny van Leeuwen: All is well, great. Thank you so much. Jan Oldenburg: Happy holidays to you, too. Reflection What did you think? Was it curious, boring, enlightening, motivating? Frankly, I was a bit anxious about sharing this with my PCORI colleagues. But if not them, who? I am who I am. Huge thanks to Jan Oldenburg for going along for the ride.  Happy holidays, dear listeners and readers. I appreciate you and your contributions. I’m grateful for your support. I look forward to another eventful year, although a little boredom would be great at this point. Onward.                
49 minutes | Dec 19, 2021
Embedded Researchers-Translators, Connectors, Stewards #152
Embedded researcher, Matt Hudson. Partnerships, self-reflection, values, equity. Treat illness in service of community prosperity. An instruction manual. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Please support my podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Introducing Matthew Hudson 00:41. 1 Introducing an embedded researcher 02:58. 2 Skillset of an embedded researcher – like a musician 05:31. 2 Embedded researchers in the community 06:57. 3 Employing, partnering with a researcher 09:10. 3 Permission versus commitment to act on research 13:26. 4 Implementation science. Just do it. 14:56. 5 Embedded researcher as steward 17:20. 5 Research in the context of care delivery. Individual health, organizational health. 18:18. 5 Workforce context 20:16. 6 Continually learning what works 24:40. 7 Music, again 31:05. 8 Do we see the questions through the same lenses? Buffing out the scratches 32:29. 8 Reveal something about yourself, not easy 36:39. 9 Self-reflection, values, and health equity 38:36. 10 Partnership: engage with blind spots and strengths 42:40. 10 Reflection 45:05  11 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn  via email DM on Instagram or Twitter to @healthhats Credits The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute®  (PCORI®), its Board of Governors or Methodology Committee. Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion Rumours of Light image used by permission from Sue Heatherington @theWaterside Quiet Disruptors Inspiration from and gratitude for Geri Baumblatt, Russell Bennett, Meghan Berman, Jennifer Canvasser, Kristin Carman, Tracy Carney, Gwen Darian, Karen Fortuna, Crispin Goytia-Vasquez, Alma McCormack, Alan Richmond, Brendaly Rodriquez, Beverly Rogers, Thomas Scheid, Lisa Stewart, Freddie White-Johnson, Neely Williams Sponsored by Abridge Links Learning Health Systems by Matthew Hudson, General orders for the embedded researcher: Moorings for a developing profession. Patient-Centered Outcomes Research Institute Advisory Panel on Patient Engagement PCORI Patient Engagement Toolkit Related podcasts and blogs https://health-hats.com/pod150/ https://health-hats.com/pod148/ https://health-hats.com/pod137/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines. The Show Proem These days, several interests swirl through my mind and heart: disparities and equity in healthcare, community-research partnerships, and continuous learning about health. Swirling sounds too pretty and neat. Perhaps it’s smearing through my mind and heart – murky and messy. Introducing Matthew Hudson Recently, I read a commentary in the journal, Learning Health Systems by my friend and colleague, Matthew Hudson, entitled, “General orders for the embedded researcher: Moorings for a developing profession.” When I reconnected with Matt to congratulate him on his article and further explore the possibilities of embedded researcher, I realized that he thinks deeply about the whole smeared mess.  I invited Matt to join us. Matthew F. Hudson, Ph.D. M.P.H. has over twenty years of experience conducting and teaching research in health care and academic settings.  He has served on multiple private and federal research review committees prioritizing patient-centered outcomes research and health care organization science.  Matthew also partners with other stakeholders to develop hospital-based programs educating patients about research design.  He and his colleagues’ efforts encourage patient engagement across the research continuum-from research question design to results dissemination. Health Hats: Matthew, thank you so much for joining me. I appreciate it. Matthew Hudson: I’m honored to be here. Introducing an embedded researcher Health Hats: Would you please introduce yourself and include the journey you went through to write that excellent article about the embedded researcher. Matthew Hudson: Sure. Sure. Again, thank you very much for the invitation. It’s always great to speak with you. For everybody else, my name is Matthew Hudson. You also call me Matt, and I currently work in a health system in the Southern portion of the United States. Professionally speaking, you could describe me as an embedded researcher. When I use the term embedded researcher, I describe someone possessing a research background. That’s typically someone with some sort of academic or research degree, but not always. But that person would immerse themselves in a health system or some type of clinical setting. And they do that to collaborate with patients and healthcare providers to investigate problems people face in actual world clinical practice. And I help them figure out ways to perform better in whatever way you would define better. But when you become embedded in a health system, you realize that the people you work with grew up and are from a different culture and neighborhood than you. And of course, I’m speaking literally, but I’m also speaking figuratively. Because to the latter, my education didn’t look the way that a doctor or nurse’s education looked. We learned different things, and we learned them in different ways. Some hospitals value that other skill set that I might bring, and they asked me to help figure out how to solve problems in assisting clinicians in figuring out how to provide care in what can be a real black box for both patients and providers. You can easily minimize or just plain forget the importance of maintaining the wellness of a community. You have to be equally invested in figuring out how to encourage prosperity in a community and not just treat illness for a small group of patients. So, I’ve been challenged to retain that perspective, being embedded in a health system, and there’s no instruction manual, at least not that I’ve found for how to work as an embedded researcher. Skillset of an embedded researcher – like a musician Matthew Hudson: Now, there are a set of skills that people expect embedded researchers to know and to apply, but that’s not the same as teaching one how to be an embedded researcher. So, for example, if somebody asked you how to be a musician, I don’t know that you would say you have to understand how to apply major and minor scales. And you have to know how to execute a chord progression or plug in your guitar. Those are all competencies. They don’t tell you how to be a musician. And right or wrong, when you say the word musician, there’s an image that comes to mind. And it’s not entirely somebody playing a scale. It’s it comes a part of their way of being. It’s a vocation. It’s a way of living your life. And it seems to me that people assume that you can tell what a better researcher is by what they do. And what I would argue is you have to dig deeper to understand embedded research, and you have to think critically about who embedded researchers are. And there’s no instruction manual that I know of to teach someone how to be that. So, I just provided in that article some general thoughts about how to live imbedded research as a vocation, for better or for worse. Embedded researchers in the community Health Hats: So, I love this idea. I had experienced when I worked at Boston Children’s that there was an embedded researcher in the nursing department. So, she was a nurse researcher who built a bridge between the patients, the clinicians, and the system and helped formulate the study question design and execute the study. And she was familiar with a lot of different cultures, both internally and externally. And I thought that a lot of what she did was bridge-building, bringing her expertise to bridge building. But as I’m thinking about one of the things I like about this is the. I just spin off into other things. Like the other day, I was talking to a friend who told me about one of her colleagues who was a first responder in his community. And he was a researcher. That was his vocation, and his volunteer work was as a first responder in his community. And so, he found himself developing into an embedded researcher in the first responder community. And I want to talk to him some more about that experience. But the point that I’ve been thinking about with your work, your writing, is how can a health system afford it and have it be part of their business plan to have an embedded researcher, and they see its value. And I sometimes wonder about how that can happen to communities. However, we might want to define the community. Employing, partnering with a researcher Matthew Hudson: Let me back up and clarify one of your assumptions. And one can assume that quote health systems can afford to utilize an embedded researcher. Now, theoretically, that’s true, but practically speaking, that may not always be the case. There are many different models that one can use to quote embed researchers in clinical practice. It’s not uncommon that a clinical enterprise assumes no financial responsibility for bringing in an embedded researcher. The clinical enterprise, quote, merely provides a host environment where an embedded researcher works. But they may not necessarily support them in terms of a salary. Health Hats: So, then they are grant-based. They’re generating income. So, our research through grants. How does that happen? What’s the business model? Matthew Hudson: So how that happens can be in many ways. I’ll just throw out a couple. An embedded researcher has a home institution in an academic setting. And that their paycheck, however that paycheck is derived, comes from the university. And as part of the relationship between a university and a health system, a scholar from the academic institution may choose to be or solicited to be embedded in the clinical enterprise. The benefit for the clinical enterprise is that they now have an individual who has particular talents and skills that they can apply to clinical problems. The attraction for the scholar is that they now know that their research can be more readily translated into a usable product, where it’s not uncommon that scholars’ research interests lack a practical application. Health Hats: Yes. Implementation science. Matthew Hudson: I want to be very careful about that because I don’t want to disparage it. Because the academy provides generalizable truths about human behavior that are gravely advantageous for informing clinical practice. There are also instances where both the researcher and the clinical enterprise would benefit from a specific application of solving problems. And so that would be the attraction for an academician to engage a health system. There must be a financial investment in developing an infrastructure where an embedded researcher and the embedded research team can thrive. For example, you have to have the personnel to facilitate electronic health record data access. And you have to develop an enterprise that can educate the system, not just on the nuts and bolts of conducting research, but the philosophy of data collection and why data collection is essential to improving clinical practice. And simply shifting a misperception that research, however one thinks about it practically speaking, is merely nothing more than a book report. Simply seeing on a piece of paper is not the same as writing a book report. A significant amount of reflection and consideration is necessary to develop a tenable research project informing clinical practice. That can’t be a haphazard enterprise. The clinical enterprise must commit to improving practice, which can’t be done cheaply. Permission versus commitment to act on research Health Hats: That’s very interesting the infrastructure part. I think the research question is vital to either the communities being served, or the patients being served, or the clinicians treating those communities or people. There’s the methodology. How is the research going to be done? What’s the science of it? There’s the recruitment of it and dissemination. And finally, what you’re saying that I appreciate is action. A reasonable likelihood that research will inform how people are doing the work together, making decisions, trying to get better. Matthew Hudson: That there is a difference between permission and commitment. Health Hats: Say more. Matthew Hudson: One may permit research to occur in a system, go ahead and do it if you think you can. Whereas commitment is we value these insights, and we want to marshal resources and a culture amenable to generating this for a greater good. I would prefer to be in the latter circumstance where an organization has committed instead of simply permitting me to do research. Implementation science. Just do it. Health Hats: Let me back up a step. In my seat on the Board of PCORI. One of the things that I try to bring up is that it’s odd that sometimes it takes work for researchers to be interested in implementing their findings. Sometimes we’re looking to recruit people who have researched to implement their findings. And that to me is a little bizarre, but I feel like you’re explaining that a little bit because that’s the commitment part. Matthew Hudson: So, let me interrupt a second. Yeah, because I also want to clarify a statement that you made. The statement that I heard was that research is not typically interested in implementing their findings. Is that a fair paraphrase of what I heard? Okay. So, I would counter with the notion that there is an entire domain of scholarship called implementation science, which focuses on clarifying the steps that promote a systematic uptake of evidence and integration in the clinical practice. And so, there is a whole group of health service researchers who are infinitely committed to ensuring that information in evidence and interventions that are proven effective get rolled out in clinical practice. Now, digging deeper into your statement or your assumption, it would seem curious to know an effective intervention. Why is it that it’s so difficult to get it implemented? Does it relate to the organization’s affinity for the intervention relative to competing goals and demands? It’s a product of whether or how information gets diffused through a system. So simply having the truth doesn’t necessarily mean that other people know it or that it gets disseminated systematically to ensure everybody operates from the same premise. Embedded researcher as steward Health Hats: Do you think the embedded researcher might have a leg up on that? Matthew Hudson: I would say that an embedded researcher would be a prime steward of that. Health Hats: Okay. I like that. Yes. Matthew Hudson: Still simply because of their training and background. I alluded to that earlier. You correct me if I’m wrong because I know you are a nurse, and I will create a story. How were you trained as a nurse, right? Given such a diagnosis, you were taught to focus on diagnosing a particular patient, treating a specific patient. A specific care plan for a particular patient. But I will create a story that you weren’t readily trained in how the organization facilitated or impeded your ability to provide that care. Health Hats: Oh. Research in the context of care delivery. Individual health, organizational health. Matthew Hudson: And so, the way I grew up, one of my degrees has three foci. One is health care policy. What is the general what are the general policies or regulations? Both at a hospital’s level or a miso level facilitates optimal care. So, there’s health policy. Then there’s quality improvement. How do we get better at doing what we know we should be doing? Then the third is understanding medical decision-making. What are the social, psychological factors that mediate either a patient or providers’ predisposition to elect a care plan and stay true to that care plan? So, I have a background in thinking about all of these contextual factors relative to what you were trained to do to figure out the care plan and diagnosis. And someone like me is trained to think more critically about the influences and the context that allows the patient and provider to capitalize on the treatment plan. Does that make sense? Health Hats: It makes sense. I’ve been a nurse for almost 50 years now. And I would say that my first, 15, 20 years was what you described, the art and science of individual care. And then, I discovered organizations, and it was understanding that I was operating in a context. And I was becoming more interested in organizational health. So, leadership and infrastructure and culture, and how that set a stage for individual care. Which is, I think, what you’re describing. Workforce context Matthew Hudson: Right now, understand that at least my comments had been focused on what happens in this black box. We’ve observed that when an individual returns to a health system for the same condition, that is quite common due to nothing within the health system. The reason that they’re producing is because of factors that operate outside of the health system. And so, if a health system fails to consider or help address the factors that portend somebody needing the health system, they will set up a revolving door such that a person can never prosper. They will continually be exposed to illnesses that require treatment within the health system. Now that is tragic in and of itself, but why is it essential in this day and age? The reason is that we have a health care workforce that is aging and getting closer to retirement. So we have fewer health providers, generally speaking, to address a population of individuals that will increasingly require health or health care. So we are putting more pressure on the individuals providing care now more than ever. Those individuals providing care are, in fact, individuals. They are real people who have to endure a work environment’s stress. And so the health enterprise is becoming very concerned with workforce burnout, right? Yeah, Health Hats: Especially with Covid now Matthew Hudson: Without question, that’s an unforeseen circumstance that’s exacerbated the current concern regarding the proportion of patients that have to be cared for relative to the provider workforce. And ultimately, we’re concerned that the stress of the health enterprise will not be able to provide patients with the optimal patient-centered care they need. So, we have to start thinking critically about two things: maintaining people’s health and wellness outside of this black box. Secondly, we need to think critically about improving the workforce health of people within this black box, which requires a critical reflection on the organization-centric factors that mediate one’s capacity to execute their sacred charge of providing patient care. Typically, people within a health system have not been exposed to the education necessary to develop research around those topics. Because they just grew up thinking critically about the biomedical paradigm. They haven’t used these organizational frameworks to think through how that would influence care. And again, coming full circle, that is why some health systems reflect on their workforce and needs. And they say we don’t have people trained in domains of, for example, the value of clinical science, implementation science, or comparative effectiveness research. And we have to solicit individuals outside of our clinical environs with the hopes that they would be interested in lending their expertise to these clinical problems that we face. Continually learning what works Health Hats: So, this is an excellent segue into this other concern that, I say other, but it just flows right into it. I’m interested in learning what works and that to me, learning what works is a continual process. And so, whether that’s on an individual level and so whether the individual is a patient or an employee, or a caregiver or it’s the systems trying to implement the findings of research and see does it work? And in what circumstances does it work in real life? And I’ve been thinking about this continual learning part. One of the things about research that I stumbled on is a beginning and an end to the research project. And it was for a particular group of people with specific circumstances and a specific setting, but we never really continue to learn. And I’ve tried to bring this up in many different forums over 20 years, and I’ve been pretty completely ineffective. And so, I’ve realized that I have this idea, and either the idea is not well-formed, or the idea is doesn’t fit into the black boxes that we’ve been talking about. So, I wonder what you think about this idea of continual learning and growing this body of evidence. Matthew Hudson: So, let me take a shot at this. This is me, again, creating a story. The reason that you have been exposed to research projects that seem to have a beginning, middle, and end maybe because there wasn’t a sufficient consideration of the generalizable truth that we could extract from the specific line of inquiry. So, for example, let’s take something easy, smoking cessation, right? Let’s say that the trick is, or the not trick. I shouldn’t say that the aspiration is to reduce the number of individuals smoking. If you design a study specifically focused on that, you can either observe that you had an impact or you didn’t have an impact. And if your interest is myopic, that is, if your interest is exclusively constrained to whether somebody smokes or not, there’s a beginning, middle, and end to that, in theory. But if you’re trying to understand the generalizable truth about encouraging preventive behavior in the absence of illness, or if you’re trying to understand the steps toward adopting a healthy behavior. You’re trying to understand that, then the research will still live because once you solve the problem of smoking, there’s always another problem around the corner that you could apply these generalizable truths to. So, in the same way, we had to try to figure out how to encourage people to obtain a polio vaccination. We were struggling with the notion that there’s a way to reduce the evidence of polio. We have this, why is it that people do not avail themselves of the shot? And there are a couple of smart people who gleaned the generalizable truth that it has something to do with perceptions related to benefits of treatment, barriers of treatment, the susceptibility of disease, and the severity of a disease that informed this social, psychological wall called the health belief model. Now that health belief model could be applied and has been applied to mountains of clinical and population health and public health challenges. In that sense, the research has lived on. There is no end to it because they tried to understand the generalizable truth about human behavior in studying polio. Catch onto that. If you can hook yourself to that, regardless of the specific research question, your research will live on because no matter how successful we are in solving problems, there will always be another problem that will emerge. Whether it’s acquired immunity deficiency syndrome, COVID, or anything, any other tragedy that befalls our population. Then the idea is, and the trick is to glean the generalizable from the research that we undertake. Health Hats: I appreciate that. Let’s take that story a little farther and say that there’s this generalizable truth, and does it work with HIV? Does it work with COVID? Does it work with measles? Continuing to ask that question and then building the pool of experience. Whether it’s systemic like vaccination or whether it’s individually related to smoking, did what we learned about smoking does that work on the reservation? Does that work with Gen X? Sure. It’s like continuing that. Music, again Matthew Hudson: If I could extend this metaphor, there is a difference between learning a song and learning music. If you learn a song, you can only play that song, and you might get tired of that song. If you understand the musical theory that motivates that song, you can rearrange those notes to create a different composition. Consequently, the number of songs would be infinite. And so, the idea is to extract information that can be infinitely useful in an array of health service quandaries. Now a word about our sponsor, ABRIDGE. Use Abridge to record your doctor’s visit. Push the big pink button and record the conversation. Read the transcript or listen to clips when you get home. Check out the app at abridge.com or download it on the Apple App Store or Google Play Store. Record your health care conversations. Let me know how it went!”  Do we see the questions through the same lenses? Buffing out the scratches Health Hats: Do you think I’m asking an important question, or am I asking the wrong question, or are there more questions? Matthew Hudson: Oh, geez. I have a visceral reaction to that because it minimizes your insight. Okay. I want to start with the premise that the question you pose to yourself is important. That I accepted on its face, and it requires no justification or validation from me or anybody. Now I say that because of the context of our embedded research conversation, the charge of embedded research is not simply to avail them to the clinical enterprise for the sake of practitioners. It’s to be of service to patients. And as a patient-centered outcomes researcher, or one interested in that, I most certainly operate from the premise that the question that the patient poses is gravely important. It provides insight into what a person values, and I’m interested in developing research relative to what individuals value and what patients value. All right. So, I bristle at the fundamental question about whether you were thinking about this correctly or whether the question has any value. Now I’m going to buff out the scratches on that, and I’ll rephrase it. And I’ll say there may be a benefit to sharing your thoughts with another person to triangulate the question, right? This is the problem that I see. This is the question that I’m asking. Do you see the problem in the same way? Tell me how you see this problem. Yeah. Do you think that this is a problem? So, in that sense, your question to me is fair. Your follow-up questions are, do you see this as a problem? I am answering it from a sincere perspective of reflection, not as a point of evaluation where I’m the arbiter of right. I’m not judging your question. And so, I think that there is value in triangulating a question that you have. You seek out individuals both that you have something in common with and don’t have anything in common with, to ascertain whether they see this as a problem or if they see the problem being resolved through similar media. Does that make sense? And the reason that I’m spending time on this is that it’s not uncommon that one poses the question. How do you get patients, clinicians, and researchers to identify a research question correctly? We can talk about strategies to develop a research question, but before you get there, who’s a group to come to some agreement on the problem? Write in English. And that does not mean necessarily we 100% agree. We can say that this group feels that this reasonably represents the problem. Rather we described the problem. What is the research question we can craft relative to addressing this problem? Health Hats: Yes. So, what you’re saying is in English, but I don’t really mean in English. What I really mean is in lay terms. Forget science, forget research, just what’s the problem? Then bring in expertise in terms of research to translate it into research terms and something that can be studied. And so now we’re back at, as you’re saying to the embedded researcher who that’s the mitzvah that embedded research serves. Used by permission from Sue Heatherington @theWaterside Reveal something about yourself, not easy Matthew Hudson: Now I want to interrupt you and back up because I said we have to define the problem, right? Yes. Now I don’t want to minimize what that means. Now, this is my opinion, editorial here. Yeah. But I think that to identify the problem; you have to reveal something about yourself. You become transparent about the way that you view the world. And one needs to be prepared for that to occur. You reveal something about yourself by what you identify as problematic or don’t identify as problematic, and how you frame it reveal something about yourself that you may or may not be ready to admit to yourself, much less to other people. And that is when you are home alone, looking in the mirror. Now, if you were doing that in a group of people, it can become particularly volatile, which is part of why this work is so difficult. It’s very difficult because it requires reflection that one may not be ready to address. And just because I said, first, you have to define the problem, and then you have to think critically about developing the research question. I didn’t want to skip over that. Argue is a developing the research question that could be pretty formulaic. I can talk about the research question. That’s defining the population, defining the outcome, defining the control, defining the intervention, and the timeline. I can spell all that out. But it’s the lead work that is particularly challenging, right? A problem that reveals something about yourself that we have to consider if we want to go into those waters seriously. Self-reflection, values, and health equity Health Hats: I remember the moment that I noticed you, meaning I may have met you already. I may have whatever, but the moment where I noticed you. Okay, this is somebody I want to know more was I think you said something similar when we talked about health equity and systemic racism. And you were talking about self-reflection. And the challenge of self-reflection. And then I thought, okay, who is this guy, Matthew Hudson? So that’s so interesting. Matthew Hudson: He’s a tortured soul. Health Hats: No. I thought it was brilliant. I appreciated it. It opened my eyes. Matthew Hudson: I love that you appreciated that I think it reflects. It’s part of my personal charge. We always need to reflect on who we are for ourselves and how we present to the world. But also, professionally that I’m of the mind that what one chooses to study does not occur by accident. It is a product of the values they bring to the scientific enterprise. And I’m of the mind that science isn’t value-free. So, science can be subject to the same prejudices, biases, blind spots, and oversights. While I say that, I want to be clear that I’m not talking singularly about the real problems of institutional racism, provider racism, and provider bias. I’m also speaking about issues that I would consider to be in the domain of illusion. We genuinely think the world looks this way when really it is that way, whatever those ways are. We bring a naivete to the research enterprise that constantly requires me to question myself. To continually explore where might my blind spots be or identify this as a problem. What about me thinks that this is identified as a problem where that not so much and that’s the same is true of health systems. Philosophically, why do health organizations prioritize population health now instead of 60 years ago? One could argue that the reimbursement landscape is that if we are shifting from fee for service where an institution receives a modicum of compensation every time they execute a treatment, there may be less urgency to consider how to restrict the revolving door. If you realize now that you are receiving a payment to address this malady the first lap around the track, and if you fail, your health system incurs the cost. That forces a change in thinking that a health system might start to value things more at time two compared to time one. And so, I just try to keep all of that in mind as I try to develop and think through how to develop research in a learning health system. Health Hats: Wow. So, let’s wrap this up. Matthew Hudson: I regret that we have to wrap it up. I can talk to you forever. Partnership: engage with blind spots and strengths Health Hats: This is good. This is really interesting. So, what do you think if If you wanted listeners to take two or three things from this conversation, what would you, what do you think are key? So we’ve talked about embedded researchers. We’ve talked about the problems. What do you think are the key things? Matthew Hudson: I should be easily able to articulate a number of things, but I’m going to give you a stream of consciousness. Health Hats: Sure. That’s great. Matthew Hudson: I’m of the mind that patients, providers, that is, healthcare providers and researchers fundamentally, they are people, and they present to the enterprise with ignorance and brilliance. Good intentions and less than good intentions. All equally. It behooves stakeholders to face their limitations and face their prejudices for themselves before they engage in partnerships. And when they engage in partnerships to accept each other for both what they can provide and their blind spots. Our obligation is to try to correct each other’s blind spots. And augment the strengths. I think that’s what I would hope individuals take from some of our discussions today. And that we understand that embedded researchers are particularly charged with thinking through those issues in service of developing generalizable knowledge that can be easily applied in service of the patients and the communities that we serve. Health Hats: Brilliant. Thank you. Matthew Hudson: I don’t know if it’s brilliant, but I think. Health Hats: Thank you. Thank you. This has been great. I appreciate I appreciate your time. And Matthew Hudson: I’ve been honored to speak with you, and I love this podcast, and I just want to thank you for the opportunity. And I hope that it’s not the last time we see each other professionally or personally. Health Hats: Yeah. Oh, I agree. I agree. Reflection Did you get all that, kind listeners and readers? Let me take a stab at summarizing the wisdom shared by Matt. An embedded researcher collaborates with people and organizations to investigate problems important to them. They act as listeners, translators, connectors, resources, and stewards. They can open doors to the black boxes of research, care delivery, and life. They can be employed by universities or health systems. Sometimes the research applies locally, sometimes in similar or diverse settings, or even to a different problem altogether. Some sponsors of research give permission to do the research, and some have a commitment to implement the findings – using the results in real life. Some researchers have expertise in implementing study findings, and some don’t. Embedded researchers are more likely to bridge the two. Healthcare providers (individuals and institutions) can directly control some of the factors related to health and can’t control others. They can’t necessarily control policy, laws, and regulations. They can’t necessarily control wages, transportation, childcare, family caregiving. Institutions can affect workforce burnout.  Embedded researchers can bring expertise about what they can’t control into institutions and research processes. Research about specific healthy behaviors, such as stopping smoking, feeds a continual learning process about other healthy behaviors. Questions people ask about healthy living require no justification.  All questions have merit. Looking at questions through different lenses can help refine the problem statement and lead to more useful research. Asking questions about health can be scary – it reveals something about you and me, the askers. We need a safe place and courage. Embedded researchers can facilitate that safe place for self-reflection. Matt seeks to walk the talk of facing our strengths, limitations, biases, and blind spots to develop knowledge to serve patients and communities. Inspiring. Phew, how’d I do summarizing? Thanks, Matt and thank you. Onward!          
21 minutes | Dec 5, 2021
Telling Stories for Different Brains #151
Turn-around. Interview of Health Hats by Craig Constantine entitled, Rich, about my podcasting process. A ton of work to keep it fresh. Ruthless editing. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Please support my podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Jumping into podcasting with both feet 1 Following my nose 04:35. 2 Ton of work, keeping it fresh and manageable 06:06. 2 Ruthless editing 07:55. 3 Process of telling a story 10:08. 3 Grateful for the podcasting communities 13:56. 4 Honoring different brains 15:48. 4 Reflection 18:49. 5 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Boston Drummer, Composer, Arranger Web/social media coach, Kayla Nelson Inspired by and grateful to Steve Heatherington, Ame Sanders, Tania Marien, Fred Guitierrez, Jane Beddall, Curtis Cates, Amanda Blodgett, Carole Blueweiss, Katherine Cocks, Karena DeSouza, Heidi Frei, Suzanne Jones, Catherine Lynch, Alice Merry, Matt Neil, Dawn Powell Sponsored by Abridge Support Health Hats, the Podcast financially Related podcasts and blogs https://health-hats.com/pod132/ https://health-hats.com/make-a-ruckus-podcasting/ https://health-hats.com/pod143/ Links Podcasting Community Pod Buffet About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines. The Show Proem From time-to-time readers and listeners ask me about my process for podcasting. Recently, Craig Constantine, a crony in podcasting, interviewed me about my podcasting journey. Craig’s process is to record a 20-minute chat and publish it immediately without editing. For listeners, find a link to Craig’s episode in the show notes. For readers, go here. Why do I republish an already published episode? I learn from different styles of production. Remember that I co-published a couple of episodes in the past few months with Mighty Casey Quinlan’s Healthcare is Hilarious. I’ll let you know my observations in the Reflections at the end. Jumping into podcasting with both feet Craig Constantine: Hello. I’m Craig Constantine. Health Hats: Hi Craig, I’m Danny van Leeuwen. I’m also known as Health Hats, and I’m known as Health Hats because I am a person with multiple sclerosis. I’ve been a care partner to several family members’ end-of-life journeys. I’m a nurse, and I have led several Electronic Health Record implementations, and I’ve been in the C-suite of healthcare. So, I wear a lot of hats. Craig Constantine: Figuratively for sure and literally. Before we pressed record, we got into the topic of how you see podcasting as being a very rich experience for you. All the things that you get from it. And then we started talking about audio, and you mentioned how podcasting as an audio medium blends several different things that you’re already passionate about. And I think it’s super important to know, like you, you’ve also done a significant amount of blogging, and we also talked about how that’s very unidirectional. I totally agree. I blog a lot, and it’s very one way. And I get on my soapbox way too often. Craig does not need a megaphone. Do you recall what your experience was? So, you have a musical background. You’re also a musician. And when you started podcasting and the first time you brought somebody else in and realized the power of having that second person engage in a conversation. Do you remember what that was like? And what sort of ideas came to mind from that opening? Health Hats: My first episode was the anniversary of my son’s death. And I had this video, a VHS video that my boss at the time had videoed an interview with my son at my 50th birthday two months before he died. I scraped the audio off that video and then told stories about our experience together, especially in his last couple of years. I didn’t interview anybody in that first episode. But it was like, oh my God, I held my nose, I took a drink, and jumped right into the possibilities of audio. And I didn’t add music until a few episodes in. I have a musician cousin, and I was talking to him, and he created some pieces for me to use. And so that opened up my mind to the possibilities of music and, oh my goodness, I’m a musician. Following my nose Craig Constantine: How did things become possible when you realize that you had, it’s almost like a cubeville, like a giant old office space where you have all these cubes. When you stand up, it’s like the whole everything is different. You just must go for it. When you stand up and look around, you suddenly realize that you had the space you were in. All these parameters are artificial. What is the thing that’s currently like when you’re creating your show? What’s something that you’re currently most curious about? Is it the other people? Is it the topics? Is it trying to succeed at a kind of communication? Health Hats: Yes. I feel like it shifts. I’m in this business, healthcare, and am in this business about learning. And so, I follow my nose and whether I meet people who are, or I know interesting people. And so, it’s just the individual. My first kick was a series with young adults with complex medical conditions transitioning from pediatric to adult medical care. And I interviewed a series of people, the young adult, or was a young adult, a parent, and then the two of them together, and I did a series. Then I did a series about chronic pain. So, it depends. Ton of work, keeping it fresh and manageable Craig Constantine: Do you okay. All right. You’re a smart guy, and you do it a lot, and you’re curious. So, one question I have is, yeah. How do you reign that there are only so many waking hours and you can only do so much stuff? So how do you reign that in? And I’m wondering if audio, oh, this has to fit in a podcast. Does that help you? I can’t do that. That’s a visual concept. Health Hats: No, that’s never come up, but what has come up is that I did have 145 weekly episodes and 500 weekly blog plus podcast episodes. And just recently decided that each episode takes from six to 30 hours to produce. And so first, I went to alternating interview and on mic episodes, and then recently, I shifted to giving myself two weeks to produce the interview episodes. It was getting to be a lot, just a lot. And so, I appreciate being able to take my time on the interview episodes. And I can play more music. So that’s good. Craig Constantine: The mistress du jour eats all my time, and I go way down the rabbit hole. Are there any other things like either systems or mindsets or processes that you use when you find a new possibility to figure out do I want to pursue this possibility versus continue? If you did a thousand episodes the way you’re going now, that would do a ton of good how do you decide whether just to keep doing what you’re doing or whether to go in a new direction? Ruthless editing Health Hats: I don’t know. I just do it. That’s not the kind of thoughtfulness that I have. My thoughtfulness is more, what’s the story I’m trying to tell. Each episode could be about 20 different things. That’s just too much for listeners. What are the two or three that are important? And unlike you, who doesn’t edit at all, I’m ruthless, or I’m learning to be a more and more ruthless editor. And I like the editing process. I’m a person whose brain works that I will have forgotten the whole conversation when I’m done talking to you. When I finished reading a book, I had forgotten the book. And so, the editing process allows me to open my brain and store that information differently and appreciate what just happened. “Oh, I didn’t know that we talked about that.” It’s a new discussion. And I do at every episode. I do what I call an article grade transcript, which means that what I know is that at least half of my followers are not listeners they’re reading. And I respect that. I started doing transcripts, but audio transcripts are not that interesting. We talk circular in fits and starts. It’s not that readable. I do edit for readability, which has a bonus for me. My work is I have developed quite the library of material that, I had the, we’ll have a consulting gig, and there’s something that comes up well, I’ve already done that, and I can just pull that. I have the material, whether the product is written, auditory, or video. I’ve already done the work much of the time, which is helpful. Process of telling a story Craig Constantine: Glad to hear you talk about its written side because that’s something I’ve started. Like I’ve done one out of hundreds of conversations that I have transcripts for. I suspect that I would get better at it. The more I do them, the more I think that’s a brilliant way to think about how to integrate the learning. It’s tough when you’re recording; Only half of your mind is in the conversation. If you listen to it again while editing, that’s one way to hear it, to be exposed to it a second time. But I’m curious about, so if you’ve written many articles, what are you thinking when you look at that transcript, and you’re trying to change it into readable materials. You’re going to change the voice entirely. What are you thinking as you’re looking at that raw transcript? Do you imagine the reader? Is that not interesting enough, or are you trying to make the whole thing a coherent story? Like how does that process work? Health Hats: That’s a good question. My process is every episode has what I call a proem, which is like a preface, and a reflection. Which is me introducing the episode and then reflecting on the episode. So, I finished the episode and then it’s time for me then some time goes on because I have quite a queue and I’ll go back, and I’ll listen to the raw file, and then I’ll write, I’ll start to write the proem, or I might start writing it and even before I listen. Craig Constantine: Because it falls out of your head? Health Hats: And it falls out of my head. And it helps me then to shape what are, what is the story here? What’s my story here. Like, why do I care? Why did I even do this? And I’m a storyteller. So, I’ve got a million stories. So, I try to get a sense of why this topic, why this person, you know what touched a nerve in me? And then I do my editing. Then I go through it and try to break it up into pieces and give things temporary heading. And then that’s the way for me to be a ruthless editor because then I can take out sections. And then I go through it and then just put my editor hat on because I spent 15 years as an editor of a journal, and now, I’m on the editorial team of another journal. And so, I’m used to editing. And then I edit, just clean it up, remove the passive, and just make it crisper so that when a person reads it, they’ll want to keep reading it. So that’s like what I do. Craig Constantine: Thank you for sharing that. It’s just me being selfish. That’s super helpful to help me find cause I’m like almost everything you’re describing. That sounds hard to do because I’ve tried to do it and I’m like, okay, keep, just keep doing it. Now a word about our sponsor, ABRIDGE. Use Abridge to record your doctor’s visit. Push the big pink button and record the conversation. Read the transcript or listen to clips when you get home. Check out the app at abridge.com or download it on the Apple App Store or Google Play Store. Record your health care conversations. Let me know how it went!”  Grateful for the podcasting communities Health Hats: Well, the other piece of that is that I am in TPF2 (The Second Podcasting Fellowship). That’s been more than three years, and we have a weekly call where we talk all things podcasting and life. And then, I host an every other week critique group, where we critique each other’s episodes and do two every call every other week. And so that’s where I learn a lot about the art of this media with this small group of people with whom we’d been working for a lot of years. I see what they do and, with Steve’s group, I’m the only healthcare person, which is great. And everybody’s got such different styles. I steal stuff all the time, and they help me work through dilemmas and answer the questions you’re asking because they come up. Of course. Craig Constantine: I’m just like so happy to hear anybody ever talk about doing the hard work of bringing there’s an experiential part to experiencing the people on the podcast when one is listening, and then there’s that other part where it says, okay, that’s great. But now, I want to get from that, I went to hang in my head new information, and I think the written form is better for that. Even people who say they’re an auditory learner maybe just haven’t encountered enough well-written material. Honoring different brains Health Hats: No, we all have different brains. One of my sons is an auditory learner, and he’s been that way all his life. Still, he’s a prolific reader. Anyway, I think it’s amazing how different people’s brains are. And so, I feel I wear all these different hats, and my audience has many different hats, so I have people who identify as patients. I have people follow me identifying as caregivers, knowledge management professionals, clinicians, administrators, or policymakers. And I like to think about all those different brains and, I have this image of a shelf of bobbleheads above my screen where I see Mary Sue there’s Susan, there’s Michael. I’m picturing them. So, I make sure that I am talking to each of them—now, being a Rosetta stone of healthcare. I say on my lead that I know a bit of a lot of healthcare and not a lot about that much. But I try to speak to each of them. And that includes people who are readers, who I know are readers. I know that Sue is only reading me. She has no idea about the music that’s in the podcast. No clue because she’s just reading me, and she’ll never listen to my podcast. I just know. But hey, she’s been following me for seven years. And so, I honor her. Craig Constantine: Yeah. I think there’s deep magic you’ve got there. I’m very intentional about thinking about what I’m doing in the audio part. Still, I feel that if I were more intentional about going back through and finding the pieces like you’re doing that would serve a written learner or a reader, that would help me as much as it would help the people who are readers. So, I think you’re absolutely onto something. And I am really glad you shared all that. I think that’s very helpful. I don’t know if I may also be out there listening, finds it helpful, but I find it super helpful. So, thank you as much as I hate to say it. That’s 20 minutes. I’m sure. Health Hats: Here we go. Great. Thanks. Yeah. Thank you so much for sharing you. You’re doing a mitzvah here, so I really appreciate it all the work that you do. So, thank you. Craig Constantine: I’m mostly crazy excited to see that people like. My greatest giggle fits happen. When people grab something I’ve created and then build do their own thing with it. Whoa, I didn’t expect them to do that. That’s how I know Lego blocks I threw up and it goes on the floor or on the table and people grab them. I’m like, yes. Okay. Lego, this is a win. Cool. Anyway, thanks for taking the time. I know how hard it is to schedule. Thanks, Danny. Take care of yourself. Reflection For this episode, I’ve listened, transcribed, edited audio and written for about five hours over 3 days – much less than usual for me, more than zero for Craig. My software platforms include Zoom, Audacity, Descript, Auphonic, and WordPress. I’ll spend another couple hours on show notes, a video trailer on YouTube, and disseminating on various platforms, LinkedIn, Twitter, Instagram, a seven Facebook pages. I have help from Kayla Nelson, my social media and web coach, and Joey van Leeuwen’s music. I have a sponsor. One process is not better than another. It depends on topic, purpose, audience, intent, and inertia. Now you’ve seen a bit of how the sausage is made. Next time I’ll have an interview with Matthew Hudson about embedded researchers. Be well. Onward.          
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