e-Patient Dave

Power to the Patient!

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It’s the 2014 MITSS “Hope” award season. Nominate! Attend!

MITSS HOPE award logoIt’s that time again!  I’ve attended this event three times, and I’m always touched and moved by how many good people have responded to a real setback – a medical “adverse event,” as they’re so euphemistically called.

MITSS is Medically Induced Trauma Support Services – for both the patient victims of medical accidents (including family) and the clinicians involved, for whom accidents can be severely traumatizing too.

MITSS founder Linda Kenney almost died from an all-too-possible accident … a local anesthetic got into a blood vessel and stopped her heart; she woke up three days later in an ICU. Out of that experience – and the healing that eventually happened with both her family and the involved anesthesiologist – she started MITSS. Linda won’t call herself a hero, but I will … same for her partner, Winnie Tobin. (They’re on Twitter as @MITSS_Support.)

Do you know someone who’s responded to such an event by Supporting Healing and Restoring Hope?  That’s what the MITSS HOPE award is about.  The process isn’t hard – you just write a 500-1000 word essay, and fill in a form as described here.

Please participate.  Here’s a bit more, from the award’s home page:

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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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“The system is squandering value in medicine” – guest post on West Wire

Click to visit the post on the West Health site
Click to visit the final post on the West Health site

West Health is a new initiative funded by Gary and Mary West, four separate organizations (read about them here), pursuing innovations in healthcare. The parent organization has a new blog on patient perspectives, “West Wire.” The first post on July 9 was an interview with friend / colleague / attorney Donna Cryer, then they invited me to submit a post.

I chose to blend the Institute of Medicine’s report Best Care at Lower Cost (which said our health system must be “anchored on patient needs and perspectives”) with California-style disruptive innovation, which is about serving the customer perspective. Their final post is here (edited to fit their word count); my original full text is below. My wording is more in-your-face than I usually am, but I chose my words thoughtfully, and I mean it.:-)
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The system is squandering value in medicine.
Disrupt! Disrupt! Disrupt!

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There’s something about Canada: patients, empathy, quality and action.

Patients Included badge

Added later: on Twitter a number of frustrated Canadian patients expressed surprise at this, because of their own difficulties in the Canadian system. I’m obviously in no position to disagree – in hindsight, this post (which is indeed favorable about my specific encounters) may sound like things are perfect there. They’re not, as I said in the second sentence. That’s social media for ya.

But, what I did say here (about my experience) is just what I meant to say.

Some of my best events in the world have been in Canada. Things aren’t perfect there, by a long shot, but since they’re free of the enormous financial pressures of the American system, they’re focused on actually delivering care, and they’re years and years ahead of most of America at taking care of people.

This brief post is about two related events.  In February I spoke in Vancouver at the British Columbia Patient Safety and Quality Council.  About 10% of the audience was actual patients – something I’d seen earlier at the Saskatchewan Health Quality Council and at Kingston (Ontario) General Hospital. (In general, Canada wins the Patients Included badge bigtime.) That event was a keynote (standing ovation) plus a “roll up the sleeves” workshop the next day: “Okay, let’s go: where do we start?”

To further spread the message to people who weren’t there, here’s a link to their page where they posted the video and slides. (Some of the slides are edited into the video, but I move too fast, so they wisely posted the slides separately!)

Then something special happened: a neighboring group, Vancouver Island Health Authority, decided to kick it up to the next level.  So I’m headed back there – less than five months later – for another event, at Island Health. They’ve been on a five year journey, totally admirable, with major cultural transformation that’s already a reality, and they’re still working at it.  So it’s truly an honor to be invited back to work on their leading edge.

Here’s an inspiring video they produced about that journey.

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Interview on WebM&M: “What could be said that would make any difference?”

WebM&M screen grab
Click to go to the interview

Sometimes the wheels turn slowly. Last August I was invited to be interviewed for “WebM&M,” an online feature that I’d frankly never heard of. The invitation said

I’d like to invite you to be a featured interviewee on the topic of “The Role of Patient Advocacy in Patient Safety” for AHRQ WebM&M, the online case-based journal on medical errors and patient safety. The Web site represents the federal government’s major effort to educate practicing doctors and nurses about patient safety. Together with its sister site AHRQ PSNet, AHRQ WebM&M gets nearly a million visits annually. You can visit the site at http://webmm.ahrq.gov.

WebM&M is managed by Bob Wachter MD (blog, Twitter Bob_Wachter), with whom I’ve crossed paths a few times; I described his work and my impression in a post here a while ago, and let’s just say I’d jump at anything he recommends. So we did the interview, and it faded away into the backlog of things being processed (by somebody else :-)).

Then a few weeks ago, up popped the transcript, ready for review. A few quick edits, and voilá: In Conversation with…Dave deBronkart (“e-Patient Dave”). It includes an 8 minute excerpt of the audio.

Honestly, I’m thrilled to have been invited to do this. Thanks to Bob, to AHRQ (the Agency for Healthcare Research and Quality) … and to every single one of the clinicians and patient advocates whose thoughts and advice in these past seven years have given me these thoughts.

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