e-Patient Dave

Toward a New Science of Patient Engagement

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“Healthcare in a Land Called PeoplePower”: a landmark paper from 2001

The first in a series about past papers that I think are important as we create the future of healthcare.

I’m preparing to participate next month in a seminar on shared decision making (SDM). SDM is the general issue of patients sharing actively in decisions about their care, as opposed to physicians and hospitals making the decision without asking.

The seminar’s full title is “The Greatest Untapped Resource in Healthcare? Informing and Involving Patients in Decisions about Their Medical Care.” The first phrase alludes to an expression made famous by Charlie Safran MD, of Beth Israel Deaconess, when he testified in 2004 to the House Ways & Means Committee’s subcommittee on health: “the most under-utilized resource in our information systems – the patient.” I recently learned it was first said years earlier by his colleague Warner Slack MD. Both of them were early mentors to Dr. Danny Sands, my primary physician.

Bluntly, these guys have been working for decades on empowering and enabling patients to be engaged in their care, and it’s a thrill to be connecting with them and moving the ball forward. I’ve met with all of them this year, and they shared copies of some of their writings. This is the first: “Healthcare in a Land Called PeoplePower: nothing about me without me.”
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How Patient-Provider Engagement Can Transform Patient Safety (new article in PSQH)

I’m honored to be the author of a new article in Patient Safety and Quality Healthcare magazine (PSQH): “How Patient-Provider Engagement Can Transform Patient Safety.”

It’s a companion to a Special Interest Keynote titled “How Patient/Provider Engagement Can Transform Healthcare,” which my primary physician Dr. Danny Sands and I will deliver December 7 at the Institute for Healthcare Improvement (IHI) Forum in Orlando. It’s my cancer story as seen from our two perspectives, as physician and patient, in the age of the internet.

Earlier versions of the talk have been titled “Illness in the Age of ‘e’,” but this event calls for a change – because participatory medicine is now a full-blown movement, with its own medical society, with its Journal of Participatory Medicine as well as the e-patient blog. Plus, significantly, patient and family engagement is now part of Federal policy – it’s one of the “meaningful use” requirements for providers to earn financial incentives in the coming years.

Clearly, the age of participatory medicine – of patient/provider engagement – has arrived.

An early ally of the movement was Susan Carr, editor of PSQH. The patient safety movement clearly sees the value of patients and families being actively engaged in all aspects of care, so we talked this summer about how we really ought to do something together. Then we realized, the subject of our IHI keynote applies perfectly to patient safety, an important part of healthcare.
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Patient & Family Engagement for post-traumatic stress and traumatic brain injury, especially military families

I spoke this morning at an event outside Boston hosted by NAMI NH, the New Hampshire organization of the National Alliance for Mental Illness. The subject was “Best Practices in Mental Health, Prevention and Wellness for Military and their Families,” and to be blunt, a major issue is suicide prevention among veterans.

This video cites that in 2009, more veterans killed themselves than all the active duty soldiers who died in Iraq and Afghanistan combined – and many vets with war-related mental problems aren’t getting any services. Whatever your political views may be about the military actions themselves, this is a human tragedy.

I spoke about the patient engagement movement, starting with citing my own father’s service in World War II and my father-in-law’s – he returned not well, and though we can’t diagnose the dead, his lifelong explosive anger sounds like today it might be called PTSD. (I emphasize that we can’t know.)

Below are my slides. I sure wish my voice recorder wasn’t out of batteries – a lot was said that’s not in the slides. At bottom are the URLs for the resources I talked about.

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How to improve healthcare faster: a TEDMED minute

This past week I was thrilled to attend TEDMED, the medical offshoot of the famous TED conferences. (TED = Technology, Entertainment, Design.) I was invited to be one of the analysts sponsored by the Robert Wood Johnson Foundation (RWJF) Pioneer Portfolio, my kinda people: “The Pioneer Portfolio is powering ideas to transform health. We accelerate the trajectory of innovation … supporting exploration and helping great ideas to gain momentum. Pioneer focuses on the future, seeking breakthroughs with the potential to generate significant health and social impact.” Huzzah!

The Pioneer Portfolio funded the creation of the e-Patient White Paper, which blew my mind almost three years ago and set me on this path. (That paper’s at top right of www.e-patients.net.)

At TEDMED RWJF asked the analysts (and anyone else!) to record brief, informal videos on how to improve healthcare fast.  Here’s mine:

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The business of patient engagement: should consumers be regulated?

I edited the top portion at 8:14 pm ET, a few minutes after posting, adding the “key difference” paragraph. Sunday morning, added the Klick Pharma item under Income.

Last month in Cambridge I met Twitter friend Bryan Vartabedian MD (Twitter @Doctor_V) at a meeting at Vertex Pharmaceuticals. We’ll cross paths this fall on the conference speaking circuit. Today on his blog he raised a rowdy, rough, but valid point: as e-patients (obviously including me) get into the business, should they/we be regulated? He said:

  • Will industry be required to publicly list monies used for sponsorship, travel and swag support of high profile patients in the social sphere?
  • Should high visibility patients who serve as stewards and advocates disavow themselves of contact with pharma just as many academic medical centers have begun?

    • As is often the case, I don’t have an answer.  I’m just raising the questions.

Smart questions. My short answer:

  • Fine with me if industry discloses those payments. Nothing to hide.
  • Otoh, I think it’s nuts and counterproductive for consumers in any industry to disconnect.

Academic medical centers have tons of evidence of influence corrupting the academic processes that are at the core of (supposed) science. For patient advocates I don’t see that there’s currently a problem that would justify adding regulators, the ensuing budget impact, etc.

Besides, there’s a key difference: academics are supposed to vet industry. It’s their job in this context. Patients, on the other hand, are the consumers – the ones the industry’s supposed to serve.

As @Doctor_V suggests, healthcare is changing now that industry recognizes patients are worth engaging with. (I presume I’m one of his “high visibility” patients.) And this turned out to be the right time for some thoughts I’ve been meaning to express about my own work.

Introductory principles: [Read more…]