e-Patient Dave

Power to the Patient!

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Recognize this voice of social change: New Hampshire’s pioneer suffragist

Ricker full portrait

I’m making a career out of changing the culture of healthcare and I want your help on another cause: honoring a pioneer of women’s rights in my state, New Hampshire.

A couple of weeks ago on New Hampshire Public Radio I heard this segment (text and five minute audio), about Marilla Ricker, who said this – in 1910:

“I’m running for Governor in order to get people in the habit of thinking of women as Governors…
People have to think about a thing for several centuries before they can get acclimated to the idea. I want to start the ball a’rolling.”

Not unlike our efforts to have healthcare think of patients as valid contributors in participatory medicine, right? It seems to take forever! But Ricker couldn’t be governor; heck, she couldn’t even vote.

My state’s League of Women Voters and Women’s Bar Association have legislative approval to have a portrait of Ricker painted and hung in the State House – but New Hampshire being New Hampshire, permission is just permission, and they have to raise the $10,000 themselves. They’re more than halfway there – less than $5,000 to go.

HEY GUYS: Why is it that only two women’s groups are honoring this pioneer of fixing a massive cultural mistake??

Here’s what I want you to do. (“You” = any gender.)
[Read more…]

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Friday: It’s #RebelJam15! Much to learn – and FREE! (Speaker Academy #24)

RebelJampot

This is an important, free opportunity for all those who want to change the world to learn from people who have experience.

This is the latest in the Speaker Academy series, which started here. 

I first encountered the “corporate rebel” movement in Saskatchewan two years ago. It was an unexpected, unscheduled pre-conference by Helen Bevan of the UK’s National Health Service – a dry run of a half day workshop she presented a week later in London. Her thoughts were so fresh, relevant, and potent that I almost fell off my chair. I mean, look what I tweeted, mid-session:
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Dr. Molly Coye joins NEHI!

Dr. Molly Coye headshotLong-time readers know that my work is going through something of a transition, with one foot in the “grass roots / we ain’t got nothin” world and the other foot in the “BMJ author / Mayo Visiting Professor / NEHI patient engagement fellowship” world. Long-time readers also know I’m nothing if not candid, so while it’s thrilling to be moving into more dignified circles, there’s still a part of me that reacts to news like this by just saying:

OMG: Molly Coye is joining NEHI!

Molly Joel Coye, MD MPH (@MJCoye) has left UCLA’s Global Lab for Innovation in Health and has become NEHI’s new Social Entrepreneur in Residence. Why am I excited? Who is Molly Coye? Well:

  • An elected member of the Institute of Medicine, which I often quote, she was a co-author of their most-cited reports on medical safety & quality, To Err is Human and Crossing the Quality Chasm. (This makes her a goddess, on my planet.)
  • From NEHI’s announcement: “Dr. Coye has also served as Commissioner of Health for the State of New Jersey, Director of the California State Department of Health Services, and Head of the Division of Public Health Practice at the Johns Hopkins School of Hygiene and Public Health” [and much more]. (And on top of her medical work, she has “an MA in Chinese History from Stanford University, and is the author of two books on China.”)
  • From UCLA’s announcement: “Under Dr. Coye’s leadership, the Institute for Innovation and the Global Lab have been tremendously successful and productive. Among the many important projects overseen by Dr. Coye and her team are included the Doximity Colleague Connect pilot, the Zipnosis online diagnosis and treatment service, the Vivify Health Remote Home Monitoring Platform, the Virtual Visits pilot project, the Patient Voice user experience-based design approach to value-based care, and the launch of Real Time Referrals and eConsult.”
  • From the iHealthTran blog in 2013: “She received the Information Technology Innovator Award from HealthCare Informatics and was named one of the 25 Most Influential Women in Healthcare by Modern Healthcare Magazine. Elected to the National Academy of Sciences’ Institute of Medicine in 1994, Dr. Coye co-authored two landmark reports on healthcare quality, To Err Is Human and Crossing the Quality Chasm. She also chaired the IOM’s Committee on Access to Insurance for Children, and co-chaired the Committee on Patient Safety Data Standards.”
  • Finally, I asked the members of our Society for Participatory Medicine (patients and clinicians) if any of them have first-hand experience with her, and within a few hours got these responses:
    • “She is on my ‘good-guys’ list”
    • “I’ve worked with her … She is thoughtful, well organized, and pleasant to work with.”
    • “Sincere and an extraordinarily diplomatic ambassador.”
    • “delightful to work with and an amazingly competent person”

Well.

I like innovation, optimism, brains, insight, and practical experience. And as I blogged about NEHI when I first got this fellowship, NEHI is action-oriented – not just a “think” tank, a “think-and-do” tank. They’re about “evidence, action, and policy impact.” Thanks too to the Commonwealth Fund – as the NEHI release says, “Dr. Coye’s work will be supported in part by a grant from The Commonwealth Fund.”

So this will be fun. And productive, I’m sure. Life is good.

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Health 1.0, 2.0, 3.0: today’s flow of information has changed what’s possible

This 51 second animation accompanies my article last week in the BMJ, “From Patient Centred to People Powered: Autonomy on the Rise.” The video expresses, concisely, a slide that for years I’ve presented in 3-5 minutes. It’s an idea first published back in 2010 by Lucien Engelen, during the same time period when he was preparing for the TEDx Maastricht event in April 2011 where I spoke. It shows how the flow of valuable information has changed, which makes new things possible, as in all other parts of life.

From the BMJ article: [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!