e-Patient Dave

Power to the Patient!

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Proposing a new *science* of patient engagement

In three weeks at the Mayo Clinic, as their invited Visiting Professor in Internal Medicine, I’ll be delivering the most fascinating talk of my career. I’ll be formally starting the process of examining whether we must all agree that there’s a hole in the dominant paradigm of how medicine works, and whether we must solve this together by creating a new, scientific approach to patient engagement.

To start, please watch the four minute video below. For convenience, and to make it more searchable, at bottom of this post is a transcript.
Cover of Structure of Scientific Revolutions 50th anniversary edition

To do this I’ll be using the 1962 book that brought the word “paradigm” into popular use: The Structure of Scientific Revolutions, by Thomas Kuhn. His definition of paradigm was much more strict and rigorous than the trendy loose word we throw around today; he studied numerous scientific revolutions (Newton, Copernicus, etc) and identified a regular, repeated structure to the process by which a scientific field takes form and then, sometimes, realizes a revolution is needed.

The process is both scientific and sociological – a fact that annoyed the crap out of scientists who believed that they are solely logical. From Wikipedia:
[Read more…]

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New BMJ article: “From patient centred to people powered: autonomy on the rise”

Screen capture of the article on the BMJ site

I’m thrilled to say that the BMJ, formerly the British Medical Journal, has just released a new article I wrote about the “social movement” aspect of our work, including the rationale for listening to the patient perspective.

Intended for medical audiences around the world, it’s part of a big, 21-article multimedia “Spotlight” supplement that will be in Thursday’s print edition; it was all released online yesterday. Over on the e-patient blog I posted the full list of articles, including the names of other members of our Society for Participatory Medicine who are in this issue. Big participation, big visibility!

This supplement, appearing in one of the world’s top medical journals, may well be the biggest moment yet in the history of our movement. It’s got hours of reading and listening, with contributions from eight countries, if I counted correctly.

Those of you in my generation – the era of many social movements – will relate to the parallels with what’s happening today: a whole class of people whose voice has been considered “not worthy” is speaking up, demonstrating capability, and pushing back when we’re told to “stay in our place.” :-)

Is it time for a new scientific field?

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NEHI Patient Engagement Fellowship

NEHI logoThere are stages of any movement, and make no mistake, the shift to participatory medicine is a social movement, a full-bore cultural movement. It’s a change in roles, a change in expectations, a change in beliefs about the validity of a new party’s perspective – in this case, the patient’s.

I’m fond of pointing out milestones, the turning points in our movement. One was the founding of the Society for Participatory Medicine in 2009. Another was when patient voices started to be invited to speak about patient issues in Washington policy meetings. Another was when the Institute of Medicine said in 2012 that a cornerstone of medicine must be “Patient/Clinician Partnerships” with “Engaged, empowered patients.” Then the OpenNotes project, the BMJ editors announcing their Patient Advisory Panel, the founding of the Patient Voice Institute last year … all are signs of the movement maturing and gaining acceptance in the establishment.

Today I’m thrilled to announce a small but significant step in another dimension: NEHI, the Network for Excellence in Health Innovation, has offered me a Fellowship in Patient Engagement – a part time six-month project, advising them about patient perspectives.

Here’s NEHI’s vision map – click it to visit their site. And note what’s at the top of the circle: Evidence, Action, and Policy Impact. My kind of people!

NEHI's vision map

Now the work starts. May this be the start of many such initiatives in many organizations that focus on improving healthcare!

For the record, here’s the 55 minute video of my keynote at NEHI’s 2013 annual meeting … as it says at the outset, this was a new approach: a new beginning and a new ending.

http://vimeo.com/76960537

Thank you, NEHI, for your vision, and let’s do this thing!

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Notes for @BCPSQC #QualityChat Twitter chat

BCPSQC web logoFor Wednesday’s “#qualitychat” Twitter chat here are a few notes.

A few notes from participants at the February event

  • “The BC Cancer Agency has led a provincial project asking patients for solutions to some of the lower Provincial Cancer Care Patient Experience scores.  It is a project to listen to the patient voice and implement some solutions that came from patients and their families. … [We have been] inspired to come together as a province to have a provincial approach and also, look at solutions that patients suggest. ” Sue Fuller Blamey Corporate Director, Quality & Safety, Provincial Health Services Authority and BC Cancer Agency
  • Let Patients Help “was sent to all Community Engagement Advisory Network members … It is also a resource that we like to share in our day to day work now.” Saori Yamamoto Community Engagement Advisory Network Co-ordinator, Vancouver Coastal Health
  • “It really brought things back to the patient and showed us THEIR perspective on healthcare.  One thing that really stood out for me what the emphasis on including patients as partners in their own care, full members of the care team.  It challenged the all-too-common thinking that they are just unknowing recipients of the care that “the experts” decide is right for them and showed that, not only are many of them intelligent and able to participate in the conversation and decision making, but also (and perhaps more importantly), that they are real partners in it, with as much knowledge and information to share re: the “problem” as anyone else on the team.” From a Quality Improvement Consultant
    • Note how this echos the thinking of the Mayo Clinic’s chief residents in this post

Post-event summaries

In less than an hour, moderator @Kevin4Quality (Kevin Smith) posted the after-event resources!

Thanks again to all for a great event!

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How great and bad “experts” treat you in Mac care – and lessons for medicine

Henry Feldman
The great: Dr. Feldman (no photo of Eli is to be found!)

For the past year I’ve had a disastrously bad experience as a Mac user, to the point where I had long Facebook discussions on how to select a Windows “ultrabook” – super thin and light, like my current Macbook Air. The final (at last!) happy outcome, just last month, shows the difference between two things that are vital in medicine too:

  • Capable wizards vs clueless goons
  • A caring approach, listening to the person who has the problem, and honoring his (my) observations and concerns.

Ultimately a friend at Beth Israel Deaconess (a doctor!!), Henry Feldman, and his colleague Eli Kaldany, figured out what my problem was – in August, nine months into the problem. (They saw me bitching on Facebook.) They nailed the problem in less than an hour. And, ironically, when another problem happened in September, I finally found someone capable at Apple – and discovered a bit of news I’ll share in a moment. [Read more…]

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WSJ: “Researchers are asking patients to help design clinical trials.”

Screen capture of Wall Street Journal

I could smack myself for not noticing this earlier, but it happened while I was at the ESMO conference in Madrid last month: Amy Dockser Marcus has another great piece on how medicine is truly starting to engage with patients as active contributors to improving healthcare. Woohoo!

The lede:

Scientists regularly sign up patients in clinical trials to test new treatments. Now, they are seeking patients to help them design some of those trials.

Patients and researchers can bring different perspectives to treating disease …

Doesn’t this dovetail deliciously with the presentation I blogged about, in my previous post?? Imagine: Scientists asking patients what they think is important! It seems clear that medicine is starting to act on the Institute of Medicine’s mandate in Best Care at Lower Cost:

A learning healthcare system is anchored on patient needs and perspectives.

Clearly, science is starting to act on the realization that patients are no longer the passive recipients of what scientists think.  (It also matches nicely Laura Landro’s front page WSJ piece in June, “Health-Care Providers Want Patients to Read Medical Records, Spot Errors”.

This is a major shift in the wind, and it’s spreading. Watch for more of this in the coming months.