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Search Results for: e book

July 30, 2018 By e-Patient Dave 3 Comments

Book review: Augmented Health(care):
the end of the beginning, by Lucien Engelen

This book is so good I don’t know where to start. Just read it. (There’s an introductory 20% discount on the e-book below.)

Except – seriously – don’t read it if you demand a roadmap from here to the future. This is from the future. The image above, of a kid with a telescope, has been in the author’s office since I first met him, but until I was halfway through this book I didn’t understand why.

In Augmented Health(care) Dutch innovator Lucien Engelen of Radboud University Medical Center goes on a tour of the landscape that may strike the unfamiliar as manic or just plain nuts. Don’t trust that reaction – listen. He is unbound by the traditional view but absolutely bound to a future world where health – and care – are augmented such that things actually work.

[Read more…]

Filed Under: books, Culture change, disruption, Evolution, Health policy, Innovation, Leadership, patient engagement, Patient-centered tech, Patient-centered thinking, Patients as Consumers 3 Comments

June 6, 2018 By e-Patient Dave Leave a Comment

Skeptics ask why patients would even WANT their medical images. We asked on Facebook.

No wonder people get tired of fighting to improve social attitudes. This one is so obvious, yet we keep getting asked the same outdated questions. What amazes me, though, is that this time the skeptical scoffing comes from uninformed innovators, not old-timers! Makes me want to bang my head on the desk.

Last week I posted here about my talk at the SIIM conference in DC, including the rousing favorable response from the audience on Twitter. It appears the popularity has aroused scoffing skepticism AGAIN: “What would patients even DO with their images?? They don’t know how to read them…”

Notice how that thinking presumes the only thing a patient could do with the image is try to play doctor!  So I blogged a bunch of the stories patients told me on Facebook in response to my request.  Have a look at the post and the fascinating range of stories people shared. How wrong the skeptics are, when they think a patient is trying to step into the doctor’s shoes. Some do in fact become good enough to spot things like a missed tumor(!) – but in most cases the patient does something that adds to what doctors normally do. Isn’t that interesting? Go read.

 

 

Filed Under: Health data, Participatory Medicine, patient engagement, Patients as Consumers, Uncategorized Leave a Comment

Book mentions

As a cultural change agent I’m always grateful when thoughts I’ve advanced prove useful to book authors.  Here are the ones I know of. (I’m happy to be interviewed; see the contact page.)

  • Digital Justice: Technology and the Internet of Disputes. ethan Katsh and Orna Rebinovich-Einy (April 2017)
  • Participatory Health through Social Media. Shabbir Syed-Abdul, Elia Gabarron, & Annie Lau (June 2016)
  • Nursing Informatics for the Advanced Practice Nurse: Patient Safety, Quality, Outcomes, and Interprofessionalism. McBride & Tietze, Dec. 2015
  • The Digital Doctor: Hope, Hype, and Harm at the Dawn of Medicine’s Computer Age by Bob Wachter (April 2015)
  • ePatient 2015: 15 Surprising Trends Changing Healthcare by Rohit Bhargava and Fard Johnmar.
  • Miracle Survivors: Beating the Odds of Incurable Cancer by Tami Boehmer (Nov 2014)
  • Service Fanatics: How to Build Superior Patient Experience the Cleveland Clinic Way by Jim Merlino (Oct 2014)
  • Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement: Workshop Proceedings. Institute of Medicine, 2014 (free PDF or read online)
  • Guide to the Future of Medicine – white paper on ScienceRoll by Bertalan Meskó, MD, 2013. p. 21.
  • Gesundheit 2.0: Das ePatienten-Handbuch, 2013.
  • Design to Survive: 9 Ways an IKEA Approach Can Fix Healthcare and Save Lives. Pat Mastors, 2013.
  • Engage! Transforming Healthcare through Digital Patient Engagement. (Interview with Jan Oldenburg.) HIMSS, March 2013.
  • Healthcare Information Technology Exam Guide for CompTIA Healthcare IT Technician and HIT Pro Certification. McGraw Hill, Dec. 2012
  • The Patient Safety Perspective: Health Information and Resources Online and In Print. Holly Ann Burt, MLIS, AHIP, 2012.
  • An Immense New Power To Heal: The Promise Of Personalized Medicine. Lee Gutkind & Pagan Kennedy, 2012.  (Chapter 14, “Patient With an E”)
  • Critical Issues for the Development of Sustainable E-health Solutions. Wickramasinghe et al, ed. Springer, 2012. p. 221
  • Wikipedia Handbook of Biomedical Informatics, 2012. p. 215
  • Information Security Management Handbook, Sixth Edition, 2012. p. 246
  • Meaningful Use and Beyond. Fred Trotter & David Uhlman, O’Reilly, 2011. (pp. 75ff (social media), 145ff, “e-Patient-Dave-gate”)
  • Policy and Politics for Nurses and Other Health Professionals. Donna Nickitas, Donna Middaugh, Nancy Aries, 2011. p. 281
  • Personal Health Records: A Guide for Clinicians. Mohammad Al-Ubaydli MD, 2011.
  • You Bet Your Life! Ten Mistakes Every Patient Makes. Trisha Torrey, 2010.
  • Macro Wikinomics:  Rebooting Business and the World. Don Tapscott & Anthony D. Williams, 2010.

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.

December 3, 2015 By e-Patient Dave 16 Comments

Screw you, Facebook. And your ignorant “real names” policy. I’m outahere.

Facebook deletion noticeFacebook has become a bunch of ignorant d*cks lately, and the missing letter is not “u.” I’ve had enough.

I awoke Wednesday to find that my FB account had been locked out – I couldn’t sign in until I prove that I am who I say. Right: like who thinks I’m not actually what my Facebook page has always said, “e-Patient Dave” deBronkart?

Then that night, talking to my wife, I discovered (see image) that my whole Facebook page has been taken down, until I stop this fraud and prove I’m really the guy who calls himself “e-Patient Dave”!

You see, since last year Facebook has been running this giant anti-fraud, anti-bullying project called their “real names” policy. Noble idea, but it’s so poorly implemented that there’s a Wikipedia page about it, including this:
[Read more…]

Filed Under: Uncategorized 16 Comments

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

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