e-Patient Dave

Power to the Patient!

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Free kidney cancer patient information day from the hospital that saved me. Please share.

As long-time readers know, in 2007 I nearly died from a severe case of kidney cancer. One thing that saved me was being very well informed by information I got from an online patient community … information that was valid but did not exist in the medical literature. (They’re now at SmartPatients.)

So my hospital, Beth Israel Deaconess, decided to start producing an annual patient information symposium, as part of the Dana Farber Harvard Cancer Center, to share such cutting-edge information directly to patients (and other clinicians of course). Free! Both online and virtual.

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Integracare Assisted Living charged us full price. Severely understaffed, they stiffed us.

Recently I’ve posted about horror stories that have happened as investor-driven chains get into hospice (here) and nursing homes (here). More broadly, nursing homes and assisted living are called long-term care, aka LTC.

For our mother and family, LTC has meant Less Than Caring. Last night, I posted My family’s disastrous experience with a growth-driven long-term care company, starting with this:

As many of you know, my mother died in October. What we haven’t disclosed until now is that it happened in horror story #3: she passed after a single week of “respite care” provided by the local outlet of a growing chain of assisted living facilities.

Many people asked who it is, and we’re ready to say: the chain is Integracare, and the local facility near Mom’s home in Annapolis is Bay Village.

Here’s how they advertise themselves. It does not in any way match our experience.

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Healthcare’s moral crime scene, part 2: private equity takes over a nursing home

Last week I wrote “For-profit hospice is a vast crime scene, and private equity is holding the knife,” about a November article in The New Yorker article. I emphasized: “Good hospice can be immensely valuable. But there are predators.”

It doesn’t stop at hospice: in August the magazine also published When Private Equity Takes Over a Nursing Home, a superbly reported piece by Yasmin Rafiei. It’s a nasty story, with the same lesson: when for-profit investors take over a care industry, and they don’t get punished for poor “care,” the cared-for can wind up in danger. Or dead.

I believe that we as consumers need to be aware that some heartless people have gotten into the care industry. Here’s how Rafiei’s article starts:

When St. Joseph’s Home for the Aged … was put up for sale, in October, 2019, the waiting list for a room was three years long. The owners, the Little Sisters of the Poor, were the reason. For 147 years, the nuns had lived at St. Joseph’s with their residents, embodying a philosophy that defined their service: treat older people as family, in facilities that feel like a home.

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“For-profit hospice is a vast crime scene, and private equity is holding the knife”

Screen capture of New Yorker article headline

Good hospice can be immensely valuable. But there are predators.

A wise friend referred me to this New Yorker article last month about a Pro Publica investigation. I skimmed it then, and today I read it in full. It’s appalling. If anyone you know is considering hospice, or has been “invited” by a company to consider it, beware. Here’s what the friend basically said – and they were right:

For-profit hospice is a vast crime scene,
and private equity is holding the knife

Note, I’m talking (and the article talks) about for-profit hospice companies. For-profit hospice chains bill the government four times more per patient than not-for-profits, and focus on both maximizing admissions and cutting costs (i.e. cutting back on services), all the while gaming the system to barely squeak under the wire before Medicare makes them give back the money.

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Citing my publications

Patient voices are now being accepted (and sometimes even invited) as authors in peer reviewed publications, a sure sign of culture change in medicine. Patients being in the literature is important, because it’s what future scientists will build on as they create the next generation of literature. Essentially, if you’re not in the literature, science has no way to build on your thoughts.

Below is a list of my most cited works. For a longer list, here are my author pages on two search engines:

  • Google Scholar: my work as first or second author has been cited 417 times (see Google Scholar screen capture at right); my h-index is 10 (a measure of breadth and frequency of one’s citations – more on this below)
  • PubMed (the National Library of Medicine’s index)

Altmetrix: As another sign of culture change, it’s interesting to see below that The BMJ is now using Altmetrix as a measure of document performance. Altmetrix pays attention to public “citing” of a paper, i.e. social media discussion – a distinctly different measure than what other scientists notice. Importantly, old media have a lag time: it takes years for new work to make a splash there. Altmetrix is new media: it measures immediate impact in today’s discussions.

Most Cited

Last updated July 2023

Per Google Scholar

Title and publicationCit’nsPub Date
From patient centred to people powered: autonomy on the rise
Invited essay (co-author) in BMJ, 2015.
Altmetric discussion score 242 (96%ile of all BMJ articles ever)		842015
“I want to know everything”: a qualitative study of perspectives from patients with chronic diseases on sharing health information during hospitalization
M Benham-Hutchins, N Staggers, M Mackert, AH Johnson, D deBronkart
BMC health services research, 2017		672017
How the e-patient community helped save my life: an essay by Dave deBronkart
Invited essay in BMJ, 2013.
Altmetric discussion score 234 (96%ile of all BMJ articles ever)		502013
Assessment of US hospital compliance with regulations for patients’ requests for medical records
CT Lye, HP Forman, R Gao, JG Daniel, AL Hsiao, MK Mann, D deBronkart, …
JAMA network open		422018
Let Patients Help!: A Patient Engagement Handbook – How Doctors, Nurses, Patients and Caregivers Can Partner for Better Care
(book) D deBronkart, DZ Sands		262013
The patient’s voice in the emerging era of participatory medicine
The International Journal of Psychiatry in Medicine 53 (5-6), 350-360		192018
Meet E-Patient Dave (TED Talk)102011
Evaluation of the patient request process for radiology imaging in US hospitals
CT Lye, HM Krumholz, JE Eckroate, JG Daniel, D deBronkart, MK Mann, …
Radiology		102019
Developing and testing a personalized, evidence-based, shared decision-making tool for stent selection in percutaneous coronary intervention using a pre-post study design
AK Chhatriwalla, C Decker, E Gialde, et al
Circulation: Cardiovascular Quality and Outcomes 12 (2), e005139		102019
Gimme my damn data (and let patients help!): the #GimmeMyDamnData manifesto
D deBronkart, G Eysenbach
Journal of Medical Internet Research 21 (11), e17045		92019
A new model: physician-patient collaboration in online communities and the clinical practice of oncology
HJ West, D deBronkart, GD Demetri. ASCO Educational Book 32		92012
Patient design: the importance of including patients in designing health care
B Meskó, D deBronkart. Journal of Medical Internet Research 24 (8), e39178		72022

Selected additional articles

Additional papers and articles on topics I consider vital in the evolution of care to be more patient centered.

  • Open access as a revolution: knowledge alters power Journal of Medical Internet Research, 2019 – transcript of my first keynote ever, at Eysenbach’s Medicine 2.0 Congress in Toronto, Sept. 2009 – the origin of the movement battle cry “Gimme My Damn Data”

H-index

My H-index (“a metric that measures both the productivity and citation impact of the publications”) is 10, comparable to a tenured academic professor

.

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Ethics and barriers: BMJ webinars on patient access to medical records

The BMJ (formerly the British Medical Journal) continues to lead the world in patient & public partnership with clinicians, including more coverage of patient empowerment topics than anyone else I know in medical publishing. Some of the issues are unique to Britain but many are global cultural issues – not least being the balance of power between clinicians and the patients they serve.

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