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: 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
- 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
Could 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.