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Search Results for: "science of patient engagement"

May 29, 2015 By e-Patient Dave 1 Comment

“The unfolding science of patient engagement”: foreword in a new book

Photo of the foreword pageIn 2013 I was interviewed during the creation of a book called Person-Centered Care, part of a project called Co-Creating Healthcare produced by Danish firm Sustainia and the German firm DNV GL. It’s a remarkable project – a series of three substantial books, all distributed as free downloads on the project’s site. (They also have print editions, but I don’t see any way to buy one!)

In January they completed the third phase of the project, a series of roundtables in Europe, China and the Americas: The State of Healthcare: From Challenges to Opportunities. I participated in the Washington meeting, and they asked me to write a foreword for the final book, which was released last month.

Because the foreword focuses on the “defining a new science of patient engagement” theme I’ve been writing about, I want to re-post it below.

As you can see by browsing the books on the project site, the whole Co-Creating Healthcare project is amazing in its depth (and the beauty of the book spreads), so I’m just thrilled that for the foreword of the final book, they chose this idea. Thank you!


The unfolding science of patient engagement

[Read more…]

Filed Under: Science of Pt Engmt 1 Comment

March 11, 2015 By e-Patient Dave 4 Comments

Proposing a science of patient engagement, #3: The role of unexplained observations

Cover of Structure of Scientific Revolutions 50th anniversary edition#3 in a series. Previous entries:

#1: Proposing a new science of patient engagement, including the four minute interview video that defines the need for the project.

#2: The stages of a scientific field: Thomas Kuhn’s framework for how a field becomes a science organized around a paradigm, and then, sometimes, realizes that “anomalies” mean the paradigm is no longer sufficient to serve the field’s needs.

The purpose of this project is to examine whether medicine needs to become more methodical – more scientific – about what we mean by patient engagement, and what factors determine how well it works.


The role of unexplained observations

Science depends on its findings being … dependable! Section 2 of Structure, “The Route to Normal Science,” begins:

In this essay, ‘normal science’ means research firmly based upon one or more past scientific achievements, achievements that some particular scientific community acknowledges for a time as supplying the foundation for its further practice.

Let’s add line breaks and boldface, to spotlight the elements of thought:
[Read more…]

Filed Under: Best of 2015, patient engagement, Science of Pt Engmt 4 Comments

March 11, 2015 By e-Patient Dave Leave a Comment

Proposing a science of patient engagement, #2: The stages of a scientific field

Cover of Structure of Scientific Revolutions 50th anniversary editionRevised March 12, adding Hacking’s “structure” passage.

This is #2 in a new series “Proposing a new science of patient engagement,” using the landmark 1962 book The Structure of Scientific Revolutions by Thomas Kuhn as its framework. If you haven’t read the first entry, please do, including its dozens of comments, which have links to valuable ideas and resources.
_________

In an upcoming post I’ll lay out briefly why it seems this project is needed. I say “seems” intentionally; this must be a shared exploration. As I said in #1,

My goal is … to have science move forward methodically in its thinking. Maybe we need a new science – a new way of understanding what needs to be measured and optimized – or maybe we don’t. I just ask that we examine the evidence together.

This post will lay out, briefly, the stages Structure describes for the progression of science. I’m doing this first because that framework provides the context for my assertion that we have a problem – a scientific problem in the field of medicine – that may require formally (and rigorously) changing our conception of who is capable of what in the patient-clinician relationship.

As you’ll see, a shared conception of how things work is exactly what a paradigm involves.

Kuhn’s view of the progression of a science

From Ian Hacking’s widely praised introduction to the 50th anniversary edition of Structure:

Structure and revolution are rightly put up front in the book’s title. Kuhn thought not only that there are scientific revolutions but also that they have a structure. …

Here is the sequence: (1) normal science…; (2) puzzle-solving; (3) paradigm…; (4) anomaly… (5) crisis and (6) revolution, establishing a new paradigm.

Going a bit deeper on some of Kuhn’s core concepts:
[Read more…]

Filed Under: Best of 2015, patient engagement, Science of Pt Engmt Leave a Comment

September 19, 2016 By e-Patient Dave 5 Comments

Medicine is flipping. Join Eric Topol and me at MedCity ENGAGE to discuss

Click to register with FOUR hundred dollars off (better price than early-bird) with promotion code EPDAVE
Click to register with FOUR hundred dollars off using promotion code EPDAVE.

If you’re, frankly, a visionary who sees that the power structure in medicine is flipping, I urge you to come to La Jolla next month.

MedCity News, one of the best health IT publishers, is hosting its annual “ENGAGE” conference. The mighty Eric Topol is speaking the first morning, and I’m doing the closing keynote on day 2. (I call him mighty because that’s what I think about his vision. So sue me.:-)

Register with promotion code SpeakerReferral and get $500 off, so your cost is only $395. That’s a heck of a good price for this list of speakers – even better than the $300 early-bird discount shown above.

Here’s why this event is unusual: [Read more…]

Filed Under: Events, patient engagement, public speaking 5 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.

April 15, 2016 By e-Patient Dave 1 Comment

Beyond Empowerment: Patients, Paradigms, and Social Movements

It’s time to move beyond empowerment and engagement, and get to the deeper issues.

For 18 months it’s been increasingly clear that the nature of this work – at least mine – has moved beyond surviving cancer (though that’s great), beyond “Gimme my DaM data” (though that’s true). It’s time to examine the core beliefs that hold medicine back from achieving its potential – its mistaken conceptions about what patients can do and should be supported in doing.

So when Susan Carr, editor of the excellent Patient Safety & Quality Healthcare, asked last summer if we should do another piece, I proposed that we pick up where I left off in 2015 as Mayo’s Visiting Professor: let’s examine whether it’s time to formally examine “the paradigm of patient”; to rigorously ask whether establishment medicine’s conception of what “patient” means – especially what patients are capable of, and should be empowered to achieve – needs to be updated. If we get that wrong, then business and science and policy can’t possibly get it right.

The resulting interview is here – they made it their cover story! You can jump to that link, but if you have a moment, I’d like to say more about its background, and why this is important.

Problems in a paradigm are not to be taken lightly.

[Read more…]

Filed Under: Culture change, Innovation, Leadership, Medical Education, Science of Pt Engmt 1 Comment

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