e-Patient Dave

Power to the Patient!

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Request: true stories of where patient engagement in the chart made a difference

Vermont IT Leaders logoI’m giving a talk in Vermont next week, to health IT workers, and in talking with the organizers we realized it would be great to give them a vision of WHY we’re doing this – some true stories of where patients benefitted from seeing the data in their chart.

(By the way, the event is open to the public, and is just $99, an amazing deal. Among the speakers will be Karen DeSalvo, head of ONC.)

Anyone??  It could be yours, or one you’ve seen in the press.  I blogged about it on e-patients.net and have started collecting answers there.

You can post your own stories, or just go read what reality is in health IT these days – can you say “Let patients help!”?

 

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Talks in Stockholm, part 2: “Dagens Patient” workshop at Karolinska Institute

This talk, last Wednesday in Stockholm, was for a significantly more academic audience than I usually face: A packed room at Karolinska Institute, the university that is the home of the Nobel Prize. The purpose in this case was to kindle some significantly new thoughts in a super-sharp audience: 20 researchers, 10 patients, 5 students, 5 healthcare professionals, academic think tank leaders, leaders in healthcare professional bodies, 5 health care professionals , 7 health care designers. A lot of people also had more than one role. Wow!

The event was part of an important Karolinska project called “Today’s Patient” (“Dagens patient”). It’s got e-patient written all over it. (This is a continuation of last Thursday’s post of my talks Monday and Tuesday at Digital Health Days in Stockholm. The closing panel video is up now.)

Email subscribers, if you can’t see the video, click here to view it on YouTube. 

(How about the nifty video editing by Anders Westin?? I don’t know how he did some of that magic! For fun he also created another “mash-up” of the song Gimme My DaM Data and photos from the day – I’ll add that at bottom.)

At the start you’ll see the introduction by Karolinska’s Pär Hoglund and Sara Riggare. Pär is, among other things, one of Sara’s academic supervisors. Sara is a Parkinsons patient (highly activated e-patient) and member of the Society for Participatory Medicine; she was the ringleader of this invitation, as she also was for my World Parkinson Congress talk, which I blogged about last November.

As I said, the purpose in this case was to kindle some significantly new thoughts in a super-sharp audience of academics and innovators in the Swedish system. Did it work? Well, yesterday I learned that they’ve decided to translate my book Let Patients Help into Swedish. I’d say that’s a win.:-)

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Talks in Stockholm – the Land of Nobel

I’ve been traveling (and recovering) enough that I’ve not blogged as much as I want. I’ll weasel out of that:-) by posting some videos. Here’s the first post.

Digital Health Days – Stockholm
(20 minute opening keynote,
tying our movement to the history
of the Nobel Prize in Medicine)

This is almost a completely new talk. Stockholm is the home of Karolinska Insitute, which is the home of the Nobel Prize. On the day before my talk, wife Ginny and I went to the Nobel Museum and looked at the exhibits about the winners of the Nobel Prize in Physiology or Medicine.

Trying to do the opening keynote for a two day conference in twenty minutes is a bitch of an assignment, frankly. I left 1/3 of my talk in the hotel room (not enough time) and still had to skip 1/3 of my slides. For this audience, my talk touched only lightly on my cancer story – I quickly jumped into lessons I found in the Nobel stories. My intent was to convey:

  • The world truly has changed. The nature of how we know things – and can know things – is different from thirty years ago.
  • Even in the best of establishment medicine, resisting change has sometimes cost us decades of progress. Beware of this. Be open to new realities.
  • Patients are the ultimate stakeholder. They have the most at stake, and can contribute real value in new ways.

My voice starts out dry and scratchy – speakers, don’t forget to hydrate!  (Subscribers, if you can’t see the video, click here to view it online)

Other resources from the event:

(I was blown away by how fast the videos were posted!  My talk was at 9:30 a.m. and it was edited, with slides, and posted on YouTube by lunch!  The conference world has much to learn from this AV team from FKDV.se)

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

Screen capture of US News web headlineLast 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.

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Patients are the ultimate stakeholder. HRO should partner with us!

hro_bannerLast month I posted that I’d be participating in the 8th international conference on High Reliability Organizing (HRO). Today I participated in a breakout session where the moderator decided to “flip” the session, and start with Q&A, making the whole session audience generated on the fly. Woohoo!

I threw together a set of slides, which I started to present as time ran out. Here’s the whole set. It’s not a speech – it’s a set of topics that just ends.

I learned a ton at this event, from people who’ve worked on preventing disasters in other industries (aviation, firefighting, nuclear energy, etc). I hope to say much much more later about what I learned – this presentation was to people in HRO who aren’t familiar with the “patient as partner” idea.

One major new buzzword I picked up is situational awareness. I know aviation and military people are familiar with it – you can’t possibly perform reliably (do the right thing) in a situation if you don’t know what the situation is. But somehow, almost everywhere in medicine, clinicians too often disregard what patients and family are trying to tell them. We need to transform this – all of us.

Here are the slides. This evening I tweaked the slides – I’d said “most” organizations when I meant “few.”

For more on the conference, here are the Twitter analytics and transcript. The hashtag is #HRO2014. (I was chatty yesterday but not today.)

 

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“Patients + Providers + Technology = Engagement” (Guest post by Patti Brennan)

Patti Brennan
Patricia Flatley Brennan, PhD, RN, PhD – University of Wisconsin Madison, School of Engineering

This is a real pleasure – a guest post by Patti Brennan (@PattiFBrennan), one of the people I admire most in the world of improving healthcare through patient engagement. I first met her through Project HealthDesign, one of the best programs sponsored by the Robert Wood Johnson Foundation: “Rethinking the Power and Potential of Personal Health Records.” I’ve also shared a panel or two with her at industry events – not nearly enough to suit me, though. :-)

Last year Project HealthDesign completed. One of its key subject areas was “ODLs” – observations of daily living. Here she explains the idea and lists some exemplary work she’s seen.

This guest post (I added some boldfacing) is long overdue – I’m just too busy for my own good sometimes! Thanks for this honor, Patti.

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Patients + Providers + Technology = Engagement

There’s a growing group of patient advocates, people like Hugo Campos or ‘our own’ Dave deBronkart (e-Patient Dave), who are calling for patients to be active and equal partners in their health—and that’s a goal that as a nurse I wholeheartedly support. At Project HealthDesign, we have worked to encourage two-way conversations between patients and clinicians, with both parties held in equal status. Clinicians are the trained experts in health care, but patients are the experts in their own lives and their own bodies. We believe that when both parties work together, more can be done to improve health care than either can do alone.

The key to forging these relationships and creating successful partnerships between patients and providers is technology.