e-Patient Dave

Power to the Patient!

  • Home
  • Blog
  • Speaker
    • Corporate & associations
    • Healthcare
    • Videos
    • Testimonials
  • Author
  • Advisor
  • Schedule
  • Media
    • Recent coverage
    • News coverage 2010-2014
    • Book mentions
    • Press resources
  • About
    • About Dave
    • Boards & Awards
  • Resources
    • Patient Communities
    • For Patients
    • For Providers
    • Speaker Academy
  • Contact

Search Results for: communities

February 25, 2019 By e-Patient Dave Leave a Comment

“Filter Bubbles” TED Talk from 2011: understanding what some sites show you (and don’t show others!)

I’ve been writing about Facebook recently. There’s lots more disturbing news about them, but it turns out some of the deeper issues are broader than one company. This is one that’s worth knowing, as we start to understand the values – and risks – of online patient communities.

During the increasingly contentious run-up to the 2016 election, several of us noticed (I know because they/you mentioned it on FB) that something had changed – the world seemed to be getting crazier, with people at both ends of the political spectrum unable to comprehend how the OTHER end could be so stupid, so ignorant, of what was blindingly apparent to them. 

[Read more…]

Filed Under: Uncategorized Leave a Comment

June 27, 2018 By e-Patient Dave 6 Comments

“Patients are the most underused resource” – Warner Slack, 1933-2018

Teaching at Harvard Medical School, 2012 (Photo: Paul Levy)

A great, great man has passed away – a man I quote in half my speeches.  I was privileged to know him enough to feel grateful about it, and especially grateful to have been able to visit him a few times in his final weeks. It’s Warner Slack, the one who famously said in the 1970s that patients are the most underutilized resource in healthcare.

There’s so much to say about him, but I’ll mostly let others speak, partly because it’s hard to know what to add. Here are a few things.
[Read more…]

Filed Under: Health data, Leadership, Patient-centered tech, Patient-centered thinking 6 Comments

March 28, 2018 By e-Patient Dave 6 Comments

Alumni club dinner: How e-patients can help healthcare achieve its potential

After eight years of speeches at conferences, I’ve observed that while medicine achieves incredible miracles that were impossible a generation ago – like saving my sorry life – it still falls short of potential more often than necessary. Lots of people write big fat books about it, but some problems don’t change, which raises the question: what can we tell consumers of the system, patients, that will help them get the best care when they’re in need?

So that’s a new series of speeches I’ll be doing, not just at big conferences but at local meetings in cities and towns, hospitals and community centers. These talks aren’t designed to change the healthcare system much; to the contrary, they’ll empower ordinary people who use the system to help the system do its best.

[Read more…]

Filed Under: Aging, Culture change, Health data, Innovation, patient engagement, Patients as Consumers, public speaking 6 Comments

Try Antidote’s clinical trials search engine

Looking for clinical trials (medical research) about a particular disease?  Here’s a window to start searching for trials that might work for you. After you answer a few basic questions about disease, age, location etc, it will take you to the Antidote search site to dig deeper.

Note: many thousands of trials are registered with Antidote, but not all the trials in the world, so when you enter a disease, you may not find any. Just follow the prompts and see what you get. See also background information below.

Guide to understanding clinical trials

Antidote has a guide that highlights clinical trial basics, specifically designed for patients. Given the increased interest in clinical trials, we thought your communities might be interested in reading this guide as a primer.

Download our guide to mastering the basics

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.

July 26, 2016 By e-Patient Dave 1 Comment

Patient and family engagement event August 8 in Concord NH

On Monday, August 8, my state’s Foundation for Healthy Communities (HealthyNH.com) is hosting an event where I’ll be speaking, titled “Improving Care at the Bedside through Effective Patient and Family Engagement.” It’s mostly intended for New Hampshire people, but organizer Tanya Lord says “I don’t think we would turn anyone away.”:-)

So come on down! Or up, or over, or whatever. Here’s a very short video introduction. (Email subscribers, if you can’t see the video, click the headline to come online.)
[Read more…]

Filed Under: Events, Participatory Medicine, patient engagement, Patient-centered thinking 1 Comment

  • « Previous Page
  • 1
  • 2
  • 3
  • 4
  • 5
  • 6
  • …
  • 11
  • Next Page »

Click to learn about Antidote’s clinical trial search engine:

Subscribe by email

Thanks! Check your inbox or spam folder to confirm your subscription.

News coverage

Click to view article


     

    


     
     
 
   
     
     
    


Archives

Copyright © 2025 e-Patient Dave. All rights reserved.