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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e-Patient Connections: A business and policy conference with real value

I think e-Patient Connections is the highest value business conference for how patient engagement can transform healthcare. Conceived by former pharma marketer Kevin Kruse, last year it attracted a hybrid audience: almost half of attendees were in public health and non-pharma sectors. All came to understand connecting with empowered, engaged patients. It was a high quality event, with smooth logistics and facilities, despite being its first year with a skeleton staff.

This year I’m speaking in the opening keynote on 9/28, and I gladly agreed to participate in this new video. I want to say why.

As regular readers know (here and on my personal blog and e-patients.net), I think healthcare transformation is both a need and an opportunity. We desperately need to stop the cost spiral, we need to much more effectively connect clinicians’ skills with the patients and families who need them, and we need to improve quality and eliminate medical errors.

Innovation has turned many industries inside out – why not healthcare?  Because we’re missing something. When smart people work hard for a long time, unsuccessfully, it’s a good bet they’re overlooking something fundamental. I believe it’s that the engaged patient is a valuable and underutilized resource, and most businesses don’t get it. So they operate, leaving a worthy resource untouched. This resource blindness constitutes waste.

E-Patient Connections 2009 taught attendees how to understand the value of connecting authentically with e-patients. I encourage people to attend.

Full disclosure: I receive no fee from this conference, just travel expenses. My speech will be inside the keynote by Klick Pharma, a client who has me on a small quarterly retainer. I support this conference for exactly the reason I said – it’s a smart, valuable event, addressing a vital aspect of making healthcare more effective and more efficient.

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eBook experts, advice please: Best way to convert complex layouts?

Update: the questions were answered (thank you all!) and the book’s now available on Kindle. Buy some now!

We have many, many requests for a Kindle, eBook (Sony) or iPad version of Laugh, Sing, and Eat Like a Pig, and the time has come to git ‘er done. BUT (and it’s a big but), for this book there are decisions to be made, so it’s time to crowdsource: what’s our best approach?

I’ve never done this, so correct me or make suggestions. [Read more…]