e-Patient Dave

Power to the Patient!

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New series: Understanding and Guiding Medical Research

With my doctor in an exam room
With my primary physician, Dr. Danny Sands, in a BIDMC exam room

Some edits made, and new items added, late the same evening.

I’ve recently learned of some well-intentioned medical research that disturbs me so deeply that I think it’s time to get formal about teaching e-patients and their partners how to detect research that misses its target, even if it’s well intentioned.

Doing this responsibly requires a deep understanding of the purpose of research and its methods. So this is the start of a series in which I’ll lay out what I’ve learned so far, describe the problems and challenges and opportunities that I see, and invite dialog on where I’m wrong and your own experiences as patient or clinician or researcher.

If this succeeds we’ll have a new basis for considering questions of what to do and how to prioritize it, in this era of change in medicine – not just in research but in all of medicine, as we work on reducing our spend. My goal in the series will be to be as clear in my writing as I can, while being as verifiably accurate as I can, given that I’m no PhD or Pulitzer laureate. Critique and correction are welcome.

This first post is an introduction, with background reading.

Context: Patient Engagement

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“Mind the Gap” on patient engagement: Uck, “What???” and the scapegoat disconnect

Sometimes I don’t know where to post something – on e-patients.net or here. My dividing line is usually: if it’s specifically about participatory medicine, it goes there; if it’s about my views about healthcare in general as someone who goes to a lot of meetings, or specifically about patient engagement, it goes here. This one’s both; I posted it on the e-patient blog, but I want it on this archive too.
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Over on Mind The Gap, Steve Wilkins (Twitter) has a poster about patient engagement that annoyed me:-) right out of the box – because although I pretty much like everything he does, the poster starts with what I find to be the ouchiest mental disconnect in all of medicine today. But it quickly follows with the flipside. Here’s a screen grab from its top:

Gut reaction to first quote: What?? “The lack of patient engagement is the Achilles Heel of health care delivery”??  Shades of Health Leaders magazine last October, which said – in an issue on Engaging the Patient no less! –

In our annual Industry Survey, leaders cite patient noncompliance and lack of responsibility as the fifth-greatest driver of healthcare costs … a quarter of respondents pointed to patients as among the top three cost drivers, ahead of health plan overhead, medical devices, pharmaceuticals, and malpractice litigation.

I love it – patient satisfaction scores are generally mediocre, 1 in 70 Medicare admissions ends in accidental death (Inspector General, Nov 2010), and the people who run these chop shops blame costs on their slacker customers. Sounds like scapegoating to me!

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Information for the Association of Utah Community Health meeting

AUCH sealHere’s information for the talk I just gave to the good folks at AUCH, the Association of Utah Community Health.

  • This talk was based on the speech I gave last summer in Los Angeles at ONC’s “road show” for the people who are rolling out health IT. See this post last summer for all sorts of references and links.
  • You can subscribe (free) to this site (see the Subscribe block at right), e-patients.net (the blog of the Society for Participatory Medicine), and our Journal of Participatory Medicine.

At the live event Friday, we had technical glitches that prevented the planned Q&A, so I’ll invite those questions in comments here, where others can share them!

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“Health IT can improve care, because information can improve care.”

Twitter friend Alicia Aebersold, at George Washington University, just reminded me of this quick video interview recorded last year. I’d forgotten! But I love what it says.

This spring I did a whole speech on the same topic, 35 minutes with slides. That video’s here.

Folks, do you (yes you, the person in your underpants) know what’s in your medical record? Your kids’? Your folks’? Now’s the time to ask – before those records become important in a crisis.

In my speeches I say “Let Patients Help.” Now it’s your turn: do the helping – help your healthcare providers. Make sure the info at their fingertips is correct. How else can they perform to the top of their training?

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Information, at the point where it’s needed, can save a life

At the Joseph H. Kanter Family Foundation’s Learning Health System Summit, at the National Press Club in Washington last month, I was asked to deliver a dinner speech about the power of information to improve the effectiveness of medical care – not just for patients, but for every doctor and nurse at the bedside. Because everyone performs better when they’re better informed.

Important: This was my first major speech that’s not about patient engagement per se – it’s about the value of information, to everyone engaged in any aspect of health or care.

Clinicians, policy makers, everyone can only perform at the top of their training if the relevant information is available where and when it’s needed. That’s IT, baby – information technology – but it’s also culture. We need the will to bring the info to the point of care – and to put an end to information that dies on the vine, unused. We can do it!

If you can’t see the video, click here to view it directly on Vimeo.

About the event:
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