e-Patient Dave

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Search Results for: videos

September 12, 2017 By e-Patient Dave Leave a Comment

See my cousin @McCullohMD on a special ABC 20/20 Weds night

Wednesday night (Sept 13) at 10pm ET, a special edition of ABC 20/20 will air, promoting a new series called “Good Doctors.” I’m thrilled to learn that my cousin Chris McCulloh, a third year surgical resident, will be featured.

I’d be thrilled to have anyone I know on such a highly visible show, but the extraordinary thing about Chris is that he almost didn’t enter medical school because a few months earlier he fell at home and end up with a spinal cord injury, paralyzing him below the waist.

Well, not only did he enter medical school, he’s a surgery resident now, planning to specialize in pediatric surgery! You’ll see he’s got a “standing wheelchair” and a whole lot of unstoppable e-patient baked in. Check it out! Watch! Be inspired like me! Links:

  • ABC’s Facebook post for this show, with preview video
  • Their Facebook page for the new series “The Good Doctor”
  • Follow him on Twitter
  • His occasional blog
  • His original blog, back to 2008, about his injury and such.

https://twitter.com/McCullohMD/status/907642507571462144

 

Filed Under: Uncategorized Leave a Comment

May 9, 2017 By e-Patient Dave Leave a Comment

Evolution part 3: February 2009 – the stage is set for an earthquake

Third in a series of retrospective posts, reviewing the ten years since my cancer and how my shifting perspective has altered what I’ll be doing from now on. I’m generally doing one post per year, but so much happened in 2009 that it’ll take several.

By the way, I added new items on my 2008 entry – things that later became important: an award I got for using data in my day job, and meeting @TedEytan. 

Forming the Society for Participatory Medicine

SPM handshake logoAt the annual “friends of Tom” retreat (Doc Tom’s friends) that I mentioned last time, that gang of crazies decided the time had come to become a medical society. In addition to deciding on a mission (patient-clinician partnerships) they talked about officers, and said “It won’t do to have this society run only by doctors, of course.” I think it was Gilles Frydman (founder of ACOR, where my patient community lived) who said it had to be a doctor-patient team. They looked around and pointed to the only pair in the room – Danny and me – and said we should be co-chairs.

[Read more…]

Filed Under: Evolution, Health data Leave a Comment

November 7, 2016 By e-Patient Dave 23 Comments

Dear John: *I* want to download my records.

Dear Dr. Halamka,

I want to download all my data from my 14 years as a patient at Beth Israel Deaconess Medical Center. What button should I push?

In June you said on your blog (left, top) and on MedCity News that no patient has ever asked for that, but your tech support says you don’t have a way to do it (see red outline).

Tech Support said I should call Medical Records. I did, and they said they can’t deliver things electronically. So where is the link you say nobody has ever used?
[Read more…]

Filed Under: Health data, Health policy 23 Comments

Books and publications

Part of creating culture change is to publish documents, professional and mass-market, that spread the word about the new view. In addition to my speeches and videos, I do this through articles and books.

Books

For more information, visit the Books page.

  • The Birth of a Battle Cry: Gimme My Damn Data
    This book is a compilation of 12 essays (blog posts) that unfolded over two years, starting my odyssey as an advocate for patient access to their medical records.
  • Let Patients Help front cover

    Let Patients Help: A Patient Engagement Handbook with Dr. Danny Sands; introduction by Eric Topol MD; now in nine languages

  • Laugh, Sing, and Eat Like a Pig: How an empowered patient beat Stage IV kidney cancer – my cancer diary on CaringBridge (excerpts), with later blog posts
  • Facing Death – With Hope. An excerpt from Laugh, Sing, and Eat Like a Pig, which the Mayo Clinic Healing Words program asked me to read from when I was Visiting Professor in 2015. Video here.

Book chapters written and co-authored

  • Book chapter: “Who Moved My Facts? Patient autonomy and the evolution of infrastructure mean best available knowledge is not where it used to be.” Chapter in A Lifecycle Approach to Knowledge Excellence in Biopharmaceutical Industry, edited by Nuala Calnan, Martin J. Lipa, Paige E. Kane, Jose C. Menezes.  June 2017
  • Foreword: “The Unfolding Science of Patient Engagement,” in The State of Healthcare – From Challenges to Opportunities published by DNV GL and Sustainia. April 2015.
  • Booklet (co-author): Reinventing Health Care: Barriers to Innovation. Aspen Institute, 2012.

Articles in peer reviewed journals

Search my publications and citations on Google Scholar or PubMed

  • Gimme My Damn Data (and Let Patients Help!): The #GimmeMyDamnData Manifesto. JMIR; Vol. 21, No 11 (2019) November
  • Prehabilitation can be tricky or empowering. BMJ 2019; 367
  • Open access: remember the patients. BMJ 2019; 365 doi: https://doi.org/10.1136/bmj.l1545
  • Developing and Testing a Personalized, Evidence-Based, Shared Decision-Making Tool for Stent Selection in Percutaneous Coronary Intervention Using a Pre-Post Study Design. Feb. 2019. AHA Journals Circulation: Cardiovascular Quality and Outcomes. Adnan K. Chhatriwalla, MD; Carole Decker, RN, PhD; Elizabeth Gialde, RN, MSN; Delwyn Catley, PhD; Kathy Goggin, PhD; Katie Jaschke, MSN, RN, AGACNP-BC; Philip Jones, MS; Dave deBronkart, SB; Tony Sun, MBA, FACP; John A. Spertus, MD, MPH
  • Assessment of US Hospital Compliance With Regulations for Patients’ Requests for Medical Records. October 2018. JAMA Network Open. Carolyn T. Lye, BA; Howard P. Forman, MD, MBA; Ruiyi Gao, BS; Jodi G. Daniel, JD, MPH; Allen L. Hsiao, MD; Marilyn K. Mann, JD; Dave deBronkart, BS; Hugo O. Campos; Harlan M. Krumholtz, MD, SM
  • The patient’s voice in the emerging era of participatory medicine. August 2018. Lead article in annual special issue of International Journal of Psychiatry in Medicine.  https://doi.org/10.1177/0091217418791461
  • Digital health is a culture transformation of traditional healthcare. Sept. 2018. Meskó B, Drobni Z, Bényei É, Gergely B, Győrffy Z.  mHealth 2017;3:38. (Acknowledged contributor)
  • Beyond restenosis: Patients’ preference for drug eluting or bare metal stents. Catheter & Cardiovascular Interventions. Qintar M, Chhatriwalla AK, Arnold SV, Tang F, Buchanan DM, Shafiq A, Pokharel Y, deBronkart D, Ashraf JM, Spertus JA.
  • “I want to know everything”: a qualitative study of perspectives from patients with chronic diseases on sharing health information during hospitalization. BMC Health Services Research: (2017) 17:529
  • The paradigm of patient must evolve: Why a false sense of limited capacity can subvert all attempts at patient involvement. Patient Experience Journal: Vol. 4 : Iss. 2 , Article 2.
  • Patient commentary: Empowered patients aren’t belittled by doctors’ titles. Nov. 2015. BMJ 2015;351:h635511/25/2015
  • Open Visit Notes: A Patient’s Perspective and Expanding National Experience, with Jan Walker, RN, MBA. Journal of Oncology Practice. May 2015. doi:10.1200/JOP.2015.004366
  • From patient centred to people powered: autonomy on the rise. Invited essay, BMJ Patient-Centred Care Spotlight,  February 2015.
  • How the e-Patient Community Helped Save My Life. Invited essay, British Medical Journal, April 2013. [BMJ 2013;346:f1990]
  • Paper: West HJ, deBronkart D, & G Demetri.  A New Model: Physician-Patient Collaboration in Online Communities and the Clinical Practice of Oncology. In: Govindan R, ed. 2012 ASCO Educational Book. Alexandria, VA: American Society of Clinical Oncology; 2012;475-479.

Articles in health-related publications and blogs

  • 8 Ways AI Can Help You Be Healthier. Men’s Health magazine, Jan-Feb 2025
  • Important HIPAA Update: New Penalties – Clinics get $85,000 Fines for NOT Releasing Data to Patients. SolutionReach Blog, 1/8/20
  • Can Your Robot Do This?? – Pick Tasks that Can be Solved Today. SolutionReach Blog, 10/8/19
  • FHIR on Fire: A New Standard to Make Patient Data More Mobile. SolutionReach 7/9/19
  • What Everyone in Healthcare Should Know About Facebook and Data. SolutionReach blog, 4/24/19
  • Whose health is it, anyway? Carium blog (on Medium), April 2, 2019
  • Consumerism Comes to Healthcare: Listening to Yelp. SolutionReach blog, 1/30/2019
  • C’mon, Healthcare – Make it Easier to do the Right Thing! SolutionReach blog, August 2018
  • It’s time to flip the script on patient engagement. athena insight, August 2018
  • “Keep in touch” – The Hallmark of Good Relationships. SolutionReach blog, June 2018
  • Do you blame the receiver if all they hear is noise? EmmiSolutions, October 2017
  • Don’t be a passive patient. Future Health Index (Philips), August 2017
  • What patients need – and healthcare doesn’t deliver. athena insight, June 2017
  • The engaged patient is an anomaly.  Let’s fix the paradigm. EngagingPatients.org, April 2017
  • The value of sharing data: What healthcare can learn from oncology. Future Health Index, March 2017
  • Lessons from Seinfeld: Empower Patients to Look in Their Chart. Health eCareers, December 2016
  • PSQH coverCould data make you live longer? Future Health Index (Philips), August 2016
  • Cover story: The Patient’s Perspective: Medicine’s New True North. PLAID Journal (People Living with And Inspired by Diabetes), Spring 2016.
  • Cover story: Beyond Empowerment: Patients, Paradigms, and Social Movements.  Patient Safety & Quality Healthcare magazine. March/April 2016.
  • Knowledge is Power. Power to the People! Guest post for Philips Healthcare, 2/5/2016
  • “My Health: Upgraded” is a clear vision from a young futurist. BMJ Blog, 9/16/2015
  • “Precision medicine” needs patient partnership, with Dr. Zachary Sholom Berger. BMJ Blog, 3/20/2015
  • Essay: Social Media is the Profound Change Fueling the e-Patient World. Mayo Clinic Social Media Health Network, 3/20/2015
  • Patient Participation: Let Patients Help With Medical Record Quality, Completeness. Invited guest column, iHealthBeat Perspective, Sept 2013.
  • The Multidimensional Role of Social Media in Healthcare. ACM Interactions magazine (Association for Computing Machinery), July-August, 2011.  (Co-author)
  • Who Gets to Define Quality? Society for Particpatory Medicine, March 14, 2011.
  • How Patient-Provider Engagement Can Transform Patient Safety. Patient Safety & Quality Healthcare magazine, November 19, 2010.

See also the Media page for interviews and articles in mainstream media (Washington Post, USA Today, Time, etc) covering my thoughts on contemporary topics.

Healthcare speaking & lectures

For speaker availability and bookings see the Contact page.

"e-Patient Dave" deBronkart head shot
Photo by Roger Ramirez, Chariot Photo. License: Creative Commons Attribution ShareAlike 3.0.
  • Top spokesman for patient experience, satisfaction, and engagement as well as disruption in healthcare
  • TED Talk with standing ovation
  • High tech veteran who survived Stage IV kidney cancer and became global healthcare analyst
  • Well respected by medicine: Mayo Clinic’s 2015 Visiting Professor in Internal Medicine; HealthLeaders “20 People Who Make Healthcare Better”

See the Digital Health Manifesto I coauthored with medical futurist Dr. Bertalan Meskó in February 2018.

Cancer survivor “e‑Patient Dave” is an international keynote speaker and academic lecturer who consistently earns extraordinary ratings by understanding each audience to deliver the client’s unique objective.

In addition to hundreds of conference speeches, panels, policy meetings and corporate events, academic lectures have become the next frontier for the social movement of transforming the role of  the patient. Resources:

  • Videos of past speeches, including TED Talk
  • Schedule & availability
  • Testimonials
  • About Dave (including speaker bios)

“Consultative speaking”

My approach in every case is to understand your specific needs and objectives. In business, consultative selling has become the norm, and it’s my approach to creating each speech. And as a culture change agent, I’m constantly interested in exploring with clients any new topic that’s appearing in their organizations.

Top healthcare topics, 2019

As the culture of medicine has evolved to newly recognize the role of patients in all aspects of health and care, explorations of patient engagement have expanded beyond my traditional topics of “Let Patients Help” and health data rights.  As a foundation issue in health and care, the role of the patient touches everything. Recently added topics:

  • Superpatients: Patients who extend science when medicine’s out of answers. Amazing, inspiring stories of ordinary people overcoming impossible odds. New book, January 2020.
  • “Let Patients Help” / e-Patients: Empowered, engaged, equipped, enabled and Health Data Rights
  • Patient Experience, Empowerment, Engagement: a business leader’s view: As co-founders of the Society for Participatory Medicine, my doctor and I are international thought leaders on partnering with patients, and I authored one of 2017’s highest-impact articles in Patient Experience Journal. With humor and insight, we share lessons learned from my many patient experiences and my business career about the value of hearing customer perspectives. We tie them to business outcomes in three domains: customer experience, business and social change, and cultural transformation.
  • A futurist looks at AI in healthcare: What’s the matter with Watson? Famously, IBM Watson failed to improve cancer care, blowing hundreds of millions in the process. I was part of the earliest meeting that found cracks in Watson’s intellectual armor – cracks that turned out five years later to be its “cause of death.” We’ll discuss the fatal flaws that made the Jeopardy genius stumble in oncology and how we should think differently about medicine’s AI-enabled future.

Additional topics

  • e-Patients: Empowered, Engaged, Equipped, Enabled. My classic topic, delivered hundreds of times in 18 countries.
  • The Elderboom: how engaging with patients can change the future of again. More than half the humans who’ve ever been 65 are alive today, and I’m one …. yet there are only 7,000 board certified geriatricians in the US. This looks like a care disaster, but it’s the next logical step: we have so many elders because medicine kept us from dying! How can patient engagement alter what’s possible?
  • Palliative Care: Let patients tell us what care really means. First keynote on this subject was to Compassionate Care Coalition of California; standing ovation. Video available on request.
  • Genomics and Precision Medicine: This knowledge really is power. I survived kidney cancer and nobody knows why. What’s becoming newly possible?
  • The opioid crisis: integrating behavioral and primary care.  Since 2012 I’ve been a patient voice in the Agency for Healthcare Research & Quality (AHRQ)’s project to merge behavioral and mental health into primary care, the Integration Academy. The project has renewed urgency in the era of surging opioid deaths. Beyond opioids, all behavioral and mental health problems dramatically affect the patient’s role in health and care: Who can perform any job well if they have mood problems or worse? In this extremely current time-sensitive talk I will share the perspectives of the academics, clinicians and financial experts I’ve worked with and specific next steps providers can take.
  • Beating pre-diabetes with apps and a course at the Y: Type 2 diabetes is a major concern under accountable care and population health – but I’m living proof that change is possible. I got that diagnosis in my 60s and beat it by successfully changing my behavior, aided by e-health apps. I’ll share the story of how I changed my diet, walked a lot, then ran a mile (for the first time in my life!), became a 5K runner, and wound up with a cover story in a diabetes journal. As always I tell it with humor amid the insights, and and emphasis on the patient’s perspective on a chronic diagnosis.
  • Patient Empowerment Around the World: From New Zealand and Australia to Switzerland, Stockholm and Dubai, I’ve had the privilege of learning from audiences and sponsors in hundreds of events in 18 countries. OpenNotes, patient rights, transparency and cultural trends all vary widely, from the best (New Zealand’s avid adoption of e-health) to countries that openly advertise “Don’t google it – trust a professional!” What can we learn from the different stages of this rolling wave of social change?
  • Population health: the role of empowerment and engagement: The shift to accountable care means providers have more reason than ever to help patients  succeed between visits – but how to do it?? As a co-founder of a medical society devoted to patient-clinician partnership, I share from personal experience and evidence how medicine is starting to understand what empowerment and engagement mean in practical clinical terms. Using validated models from empowerment movements outside healthcare, I’ll explain how it really works (how it feels!), and how data, training, and access to coaching can transform what your patients achieve.
  • The Quantified Self: How the data patients collect, and apps patients develop, are changing what’s possible in managing their care. Examples: Hugo Campos, Dana Lewis / #OpenAPS, Michael Seres of 11Health
  • How Patient Voices are changing Academic Journals. As a member of the BMJ’s Patient Advisory Panel I’m seeing how both the publishing process and peer review are altered when the ultimate stakeholder (the patient) is invited to guide research.
  • MACRA, accountable care and population health: Let patients help! The shift from fee for service to accountable care means there’s plenty of reason to help patients be successful at home, beyond direct contact with providers and services. How to do it??
e-Patient Dave delivering guest lecture at Semmelweis University, Budapest
Guest lecture at Semmelweis University, Budapest

Academic and medical lectures

As our movement has progressed, the work has migrated beyond medical conferences into academia and provider institutions. I was the Mayo Clinic’s 2015 Visiting Professor in Internal Medicine, addressed the 100th annual meeting of the National Board of Medical Examiners, and have delivered Grand Rounds, seminars and lectures as part of courses, as well as honorary lectures. References available on request.

My intention in all cases is to serve your curriculum and your learners.

Let’s talk.

Visit the Contact page.

May 5, 2016 By e-Patient Dave 5 Comments

An examined life in an unfolding movement

Yesterday I wrote about a mistake I made last year at Medicine X, behaving unfairly to a volunteer while over-tired. At the end I said “I believe in introspection – ‘the examined life,’ as they say – and continuous self-improvement,” and that I’d be saying more about what I’ve learned.

In potentially troubling times, what makes a difference is what you’re committed to, because that’s where your compass points even when things get bumpy. My goal in this essay is to close out the episode having learned something. Here’s what I see.

[Read more…]

Filed Under: Culture change, Innovation, Leadership, Participatory Medicine, public speaking 5 Comments

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