Leadership

January 26, 2015 By e-Patient Dave 8 Comments

NEHI Patient Engagement Fellowship

There 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!

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!

December 2, 2014 By e-Patient Dave 3 Comments

“Activate your super-patient powers”: Public event (free!) at Brown next Monday

Superpatient flyer screen capture — Click to view & download the PDF (459k)

For years I’ve been saying that this movement won’t really be creating change until it gets out of the conference world and reaches Main Street. (Often I say we won’t really be getting there until the people you meet at the grocery story know what we’re talking about.)

So you can imagine how thrilled I am that Brown University in Providence, R.I. is supporting a first-of-its-kind grass roots event next Monday night, attached to a session I’m teaching the next day for one of their courses.

We’re playing with the idea of tying this to “how superheros got their superpowers” – the so-called “origin story,” like Peter Parker and his radioactive spider – to help people see that they may be capable of more than they realized. And in that context, we realized we have three different types of “superpatients”, who will present:

Acute care, like my kidney cancer – it came up suddenly (and now it’s over)
Chronic care – people who manage a chronic condition, like famous diabetes blogger Kerri Sparling (@SixUntilMe)
Crisis care – patients or caregivers who step up in a crisis and do everything they can to help, exemplified here by Pat Mastors (@PMastors).

These cases are all very different but they have a common thread: when patients get activated they can make a huge difference.
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This event all came together very quickly, so I apologize for the last minute nature of this notice. If you can come, that’ll be great. In any case, feel free to download this PDF or just send people this link.

If this gets great reviews, I hope to do more. If it doesn’t, we’ll fix it. Because from now on it’s “game on” – let the change take root!
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The course where I’m speaking is Brown’s Executive Master in Healthcare Leadership program – a year-long course for mid-career executives. Tuesday is their final session of the course. Thank you to Angela Sherwin and Judith Bentkover for their vision, and to Brown’s program for helping make this happen!

October 22, 2014 By e-Patient Dave 17 Comments

“A union of forces between providers and patients”: Mayo chiefs name a patient as 2015 Visiting Professor

Boy, is this a thrill: the Chief Residents at the Mayo Clinic have invited me to be their Visiting Professor in Internal Medicine next March.

A patient. As Visiting Professor. Is that a sign of the changing times?? The announcement is being made today, during the patient panel at Mayo’s sixth annual social media summit. Here’s their post, including a four minute video interview.

Here’s their press release – their words – then I’ll discuss below.

“A union of forces between providers and patients”:
Mayo chiefs name a patient as 2015 Visiting Professor

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July 23, 2014 By e-Patient Dave 1 Comment

US News: 10 Tips from Empowered Patients. (Mine: the basics of empowerment)

Last week US News & World Report ran a “slide show” (series of short pages) with tips from 10 empowered patients. They’re all good – I recommend you go read them. (Click the graphic, or click here.)

Knowing that other patients would be giving lots of tips, for mine I decided to focus in mine on something that’s been on my mind a lot lately:

We’ve learned that the patient movement shares patterns with other cultural awakenings. Who knew?

I’m 64 years old. In the ’60s I learned that step one of empowerment is to know what you want. Step two is consciousness raising: Realize who’s saying what to whom, and what assumptions that might imply. Perhaps it’s what you’d like; if not, step three is to ask for it.

Enlightened patients (and clinicians) know that nobody knows everything – neither patient nor clinician – and approach it as a partnership, in what we call ‘participatory medicine.’

It feels a little odd to be teaching empowerment principles (which I learned in college long ago) to a mass market audience, but increasingly I see this is what we need to do.

This is no small issue – it’s not just about patient rights per se. If people haven’t thought about what they want, and haven’t become conscious of what’s happening around them, and haven’t asked for what they want, then when advocates request change, earnest physicians have every right to say, “Look, my patients aren’t asking for this.”

So think about what you want, and see whether things are going the way you want. That applies both in a hospital and in a doctor’s office – anytime you’re tending to someone’s health, including your own.

November 27, 2013 By e-Patient Dave

The Garfield Project: learning from the death of our 20th President

James Garfield (from WhiteHouse.gov) — James Garfield (source: WhiteHouse.gov)

One of my most potent, visionary, and interesting clients this year was back in February – St. Luke’s Health System in Boise. (Did you know Boise is pronounced Boissy, not Boizey?)

I could say a lot about the time I spent working with them. Their CEO David Pate had heard me speak a year earlier at a small CEO roundtable, and subscribed to this blog. When I posted my RFP for my skin cancer, he wrote and said “I’ve got a proposition. Come do your talk as Grand Rounds, and we’ll do the surgery for free.” I said “Thanks but no thanks – but since you asked…” and we started a discussion that led to a multi-day engagement, working with their leadership team and giving a keynote to a big leadership meeting last winter.

I subscribed to his blog too, and in today’s feed is a fascinating story: Learning from the 20th President. That president was Garfield, who died 132 years ago. He was shot, but the bullet didn’t kill him – an infection did, months later, almost certainly caused by the stream of doctors who stuck their unwashed fingers and tools in him to try to find the bullet.

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