I was recently interviewed by PJ Mierau, founder of the PatientCritical coop in Canada, for his podcast. PJ came up with a new metaphor for how patients handle varying amounts of information, when their abilities or their capacity (due to illness) may vary: it’s a Web principle called “responsive design.” Below are some notes on that, and on patient co-ops. Here’s the episode, and here’s a rough outline:
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Skeptics ask why patients would even WANT their medical images. We asked on Facebook.
No wonder people get tired of fighting to improve social attitudes. This one is so obvious, yet we keep getting asked the same outdated questions. What amazes me, though, is that this time the skeptical scoffing comes from uninformed innovators, not old-timers! Makes me want to bang my head on the desk.
Last week I posted here about my talk at the SIIM conference in DC, including the rousing favorable response from the audience on Twitter. It appears the popularity has aroused scoffing skepticism AGAIN: “What would patients even DO with their images?? They don’t know how to read them…”
Notice how that thinking presumes the only thing a patient could do with the image is try to play doctor! So I blogged a bunch of the stories patients told me on Facebook in response to my request. Have a look at the post and the fascinating range of stories people shared. How wrong the skeptics are, when they think a patient is trying to step into the doctor’s shoes. Some do in fact become good enough to spot things like a missed tumor(!) – but in most cases the patient does something that adds to what doctors normally do. Isn’t that interesting? Go read.
A speech to remember: opening keynote at SIIM on “Inspiring Collaboration”
Twitter photo by Rasu Shrestha MD, MBA, Chief Innovation Officer at UPMC
There are lots of ways to measure the success of a speech. One is what the audience says on Twitter during the talk. I’ll let them speak for themselves, below.
From Paternal Care to Autonomy and Emancipation (15 minute slidecast)
For the past several years a number of themes have repeatedly arisen in my work that aren’t widely discussed elsewhere, and I’ve wanted to make them available to wider audiences, so I’ve started recording occasional “slidecasts” – I play the slides on my computer and narrate. Here’s the latest. It’s a core topic in rethinking the patient-provider relationship: paternal caring, which is necessary in some situations, vs the increasing shift to patient empowerment, autonomy, and even emancipation – the removal of constraints.
I did this for my head & neck cancer patient friends in New Zealand, whom I met during my fellowship last fall. We’ve kept in touch on their Facebook group. On Thursday two of them, Maureen Jansen and Tammy von Keisenberg, are speaking about “health literacy” – a subject that’s misunderstood far too often, and which is often tied to discussions of whether patients should or can be independent to one extent or another. Food for thought.
Thanks once again to the sponsors and organizers of that fellowship: Spark Revera (New Zealand’s telecomms company, totally into the emerging world of e-health) especially @eHealthDoc Will Reedy MD, and Waitemata District Health Board, especially head & neck cancer surgeon David Grayson MD @Sasanof and its “i3” innovation center headed by Dr. Penny Andrew.
Flaming dissent on the roles of patients – what’s morally right for us(!), part 1
I keep seeing patterns of thought that I frankly think are pretty benighted. With luck, shedding some light on them will help. This one is so STUCK in darkness that I’ve decided to publish a little series on the subject.
First is this editorial about patients in research. Next will be what happened when a researcher I know became a patient/family member. Then will be how this fits into a century-long timeline of progressing toward patient autonomy … which of course requires a matching increase in patient responsibility.
Notes for NAM’s Action Collaborative on Clinician Well-Being and Resilience
I’m participating today as a “consumer/patient” voice in a meeting on clinician burnout, part of a project of the National Academy of Medicine. I was going to be there in person but a bad and contagious coughing cold kept me home, so I’m watching and listening remotely.
Remote participants often don’t get as much chance to speak up, so I’m doing what empowered people do: find another way to get heard.:-)
Burnout is important to me, because I’m deeply grateful to the highly trained people who saved my life 11 years ago, and I want them to have a good life. But look at the statistics in the project’s infographic here. It drives me nuts (and makes me sad) that the doctors and nurses who put in all those years of training, and gained their years of experience, are so often unhappy with their working life.
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