Power to the Patient!
I’ve started compiling all my virus posts into a /covid19 page.
Four months ago in Winter’s coming. Time to talk about ventilation for coronavirus defense, I talked about ventilation (fresh air) and about HEPA filters for cleaning indoor air. Here’s an update, focusing particularly on the latest bee in my bonnet: CO₂ detectors.
[Read more…]Major updates made Sunday 10/6.
Today I had a rare privilege and challenge: I spoke to a kind of audience I’d never addressed before – the World Parkinson Congress in Montreal. I was one of four speakers in a two hour session “New Views of Managing Parkinson’s Disease”; we each had 25 minutes plus Q&A. Above is a photo I took from the stage – a big hall at the Palais de Congres, with over 2,000 in the room.
I composed a talk about patient empowerment (in the context of Parkinson’s) based on things I’d learned about the disease community – and, importantly, research issues – from two good friends with the disease, Sara Riggare of Sweden and Perry Cohen of DC. They must have coached me well, because four times I was unexpectedly interrupted by applause. It was webcast, and video of the session should be published in a day or two.
One item I noted in the talk was a brand new, magnificent book [right] that was launched at the conference, conceived, written, edited and produced entirely by patients. In my view this book is the instant exemplar of how patients can define their disease to the world: the experience of getting the diagnosis, exploring treatment options with each other, coping with life with the disease, and much more. It’s a gorgeous, browsable, full color coffee table book – you can jump in anywhere. More on this book later.
Here’s a version of today’s slides, modified to be more understandable without the audio:
World Parkinson’s Congress 2013
There was enough interest that we added an unscheduled breakout session in a side room – thanks to organizer Eli Pollard for her quick response!
The unplanned session truly had no plan – we started talking and taking notes. In a sense this was an example of a point I make frequently: patients know what patients want to know. It was great to see the fire and hope in the eyes of these patients and caregivers who want so much to define the future on their own terms, given the constraints of the future they own. I took notes as we talked (using the room’s projector) and promised to publish them.
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I often compare the “listen to patients” movement to other social movements from my delightfully long life. :-) One of the folk songs of my adolescent years was Bob Dylan’s “The times, they are a-changin’.”
And so they are.
Last fall the Institute of Medicine – the pinnacle of academic medicine – published a major report, Best Care at Lower Cost, which I’ve mentioned here repeatedly. Assembled by an absolutely blue-ribbon team, it has many quotable items, but my favorites is this: (Page S-11, page 34 of the PDF)
Patient-Clinician Partnerships
Engaged, empowered patients – a learning health care system is anchored in patient needs and perspectives and promotes the inclusion of patients, families, and other caregivers as vital members of the continuously learning care team.
Read that carefully. A lot of people who work in medicine don’t yet know about this report, and many who do haven’t yet had it sink in. A perfect example is Medicare, with their well-meaning paternalistic project “Partnership for Patients.” Note: it’s a partnership for patients, which is not something you’d say if you thought of patients as someone who’s on your team.
Original post here was June 2013. Or, jump to the Nov 2015 update below.
Latest in my series Let patients help, cost-cutting edition
I’ve blogged several times about the greatest truth I’ve learned about the business of medicine. It’s the title of a 2006 Health Affairs article by Princeton economist Uwe Reinhardt: The Pricing of US Hospital Services: Chaos, Behind a Veil of Secrecy.
The cost chart at right shows what’s happened since Reinhardt’s paper appeared, in the middle of the chart. It’s what you’d expect if slush is flowing around with nobody watching.
Today I was reminded that it ain’t just hospitals. :-)
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Last week I got my annual checkup. There were two separate problems in my hospital’s appointment system, so I ended up leaving too late to get the simple lab work my doctor had ordered; I said I’d get it done at a local lab.
Today I visited AnyLabTestNow, a chain with a local office. I called ahead, and for walk-in self-pay, it’s $49 for the chemistry panel I needed (Calcium, CO2, etc) and $49 for the cholesterol, total $98. And a $10 off coupon, on the site! Just $88.
Or not.