e-Patient Dave

Power to the Patient!

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“Knowledge is Power. Power to the people.” (Guest post for Philips Healthcare)

For healthcare to achieve its best,
empower the patient and family.

Here’s a composite of four quote graphics Philips tweeted yesterday for World Cancer Day:

Memes Philips tweeted with links to the post

I’ve had the good fortune to cross paths with Philips Healthcare several times, most recently for a speech (video) at the big RSNA radiology convention in Chicago. I just love what they’re doing in partnership with REshape and Innovation Center at Radboud UMC, where my crazy-amazing friend Lucien Engelen is rapidly creating the future of health and care with Philips and Salesforce.com. Seriously: watch what will come out of that threesome!

So when Philips asked me to do a guest post for yesterday’s global #WorldCancerDay, I said sure. It ran on their blog yesterday.

“Knowledge is Power. Power to the people.”

For healthcare to achieve its best, empower the patient and family.

When social change meets innovation, new things become possible. That’s what’s happening in the patient world, as “participatory medicine” is empowered by patient access to all kinds of useful information.

When the Web was born the term e-patient was coined by “Doc Tom” Ferguson to describe a new kind of patient, no longer in the dark but thoroughly empowered to achieve new things – because they have unprecedented access to information. The idea has matured and deepened, and now, ten years after Ferguson’s death, is coming of age with the signature catch-phrase ‘empowered, engaged, equipped, enabled’.

It’s a moment we should celebrate, because for too long medicine has edged away from the changing landscape of consumer power. Every industry from music to travel to supermarkets has gone digital, sharing knowledge and power and flexibility with their consumers, but medicine has lagged behind: many are not on board, and it’s holding healthcare back.

This is serious stuff: the information revolution has touched my medical life more than once – sometimes in life-saving ways:

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New S4PM survey: patients overwhelmingly do believe in collaborating with clinicians

The Society for Participatory Medicine has just released the results of its latest survey. I (and we) have been saying for years that people are more interested in partnering with their healthcare providers than the industry thinks, but even we didn’t think we’d see an 88% number. (Note: the survey was conducted by ORC International, a serious survey firm, and they made us hone our wording to carefully represent what it showed and didn’t show.)

Let patients help – we want to!

More on this later – it has so many implications. For now, here’s information on the SPM website and blog:

SPM Infographic on Partnerships and Self-Monitoring FINAL

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Reusable building blocks: a speech (to the Philippines!) by video Q&A

Click to watch the video series in “couch mode” (autoplay) on Vimeo

One of the major enablers of the e-patient movement is the internet. In addition to serving as a vast widely-accessible library, it provides “information capillaries” that make it possible for vital information to flow to the point of need – without centralized control. My life is just one of many that’s been saved by this radical change in what’s possible.

Another mechanism is that the Web has made possible a truly incredible collection of tools by which we can assemble combinations of things that we find useful – again, without any centralized control. One example of this is MOOCs (Massive Online Open Courses), which I’ll be writing about more soon: the content for a course is made available to anyone who has internet access, which is enormously different from requiring that someone travel to the school.

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Fighting for social change: on Martin Luther King day, meet Marshall Ganz

Moyers Ganz interview screen capture
Click to watch the interview (33:43) on the Bill Moyers site

Last Friday I posted about what I see as the coming culture war, continuing the theme of last year’s posts about the need to change medicine’s beliefs about the role of patients in health and care.

Today, for Martin Luther King day, I want to talk about what it takes to create a movement that really does accomplish change.

Marshall Ganz is a master of movements. I first heard of him during a retreat in 2012; you can see on his Wikipedia page all the movements he’s been involved with, from the Freedom Riders in Mississippi to the United Farm Workers to the Obama campaign. Successful movements.

What does that take?

Here’s how PBS’s Bill Moyers introduced his 2013 interview with Ganz:
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Dr. Rich Mahogany’s “Man Therapy” – with 18 Point Head Inspection :-)

Screen capture of "Dr. Rich Mahogany's Man Therapy" (not a real therapist"

Update, December 7: I’m at a meeting talking about community mental health in Colorado, and it turns out this program didn’t work out as being effective.

I recently attended the first White House Dialog on Men’s Health, at the Eisenhower Executive Office Building. The day got a little out of control – speakers in the first session ran way long, nobody reined them in, so the middle hour (where I was going to co-lead a breakout) got cancelled. Oh well. But for me the whole trip was worth it just to discover this: “Dr. Rich Mahogany,” a fictional therapist who makes clear that getting therapy is not just for woosses, it’s for real men, too: his site is Man Therapy, including a manly, interactive 18 Point Head Inspection.

It’s all real – the information is serious – but it’s couched in terms to be humorous, entertaining and engaging, as in “Stick around – there’s something useful here. Have a seat.” Here’s the About video, from their YouTube channel:
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Patient Engagement and Empowerment: A Culture War Begins (lecture at MITRE)

A Culture War Begins - title slideI’m starting 2016 with a series of posts that lay out “the arriving future” of health and care. Previous entries:

Technological advances are making new things possible, and our deepening conception of what medicine is about (and how best to achieve care) are changing our thinking about the nature of the work. We are truly shifting from “the doctor knows everything that needs to be known” to patients as potentially capable partners.

This is real culture change. Predictably, the establishment fights back: some people don’t believe it, some just don’t like change (especially change in their work), and some don’t like what they perceive to be a challenge to their authority.

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