Boy, social media is amazing. This just happened on Facebook.
(And, later tonight someone pointed out that it’s a 2005 article based on a 2003 speech! So I edited this post. For some reason people are circulating it again.)
An amazing development in my RFP quest, first pointed out yesterday by Nick Dawson; the link was shared by Giovanna Marsico from Paris:
I just ran across this – brilliant, hot off the presses, from TEDxEast in New York last November: presentation designer Nancy Duarte (@NancyDuarte) puts together just about everything I know about how to do a talk and a lot more. A comprehensive model of how great talks are structured – using “I Have a Dream” and Jobs’ iPhone launch talk as examples.
This is your training kit; if you want to change the world, master this!
The other day I announced my new skin cancer diagnosis and discussed how I’ll blog my approach to it as an e-patient.
I’ve decided to explore my options by doing what companies do when they’re shopping for a solution: they write a Request for Proposals, and let vendors reply. But in this case what I published isn’t cast in stone – I invite discussion and suggestions. And, significantly, I start with the context: partnership; participatory medicine -
I’m approaching this through an RFP process because I believe in “participatory medicine,” in which patients play an active and responsible role in all aspects of healthcare. I believe patients should play an active role in making care more cost-effective and patient-centered, by being responsible about costs and by saying what they want.
Here’s the RFP, in Google Docs. At top right of that page there’s a place to leave comments, or discuss here. Thanks for helping!
Photo of the lesion, Nov. 15 (click to enlarge, if you really want)
Update Feb. 11: I’ve decided to publish what I want to find in a provider: see this post.
Be sure too to read the substantial information contributed below in comments, some by e-patients and some by participatory providers. This process is interesting to observe!
An odd consequence of speaking at medical conferences is that sometimes my face is displayed, real big, on monitors at the front of a room. That happened in November at the Aligning Forces for Quality (AF4Q) annual meeting in Washington.
At the end, Lisa Letourneau MD, MPH of Maine Quality Counts raced up, pointed to my jaw, and said “You should have that checked. I think it’s a basal cell.” (That’s the least serious type of skin cancer – see Wikipedia: “Basal-cell carcinoma (BCC) is the most common type of skin cancer. It rarely metastasizes or kills.”) A few days later I took the picture at left, and started watching.
I had a basal cell removed from my nose 30+ years ago. (More on this in a moment.)
To me it was just a shaving cut… but, I realized, it wouldn’t heal. For the next two months I was a slug (a not-engaged patient!), but I did take pictures, and son of a gun it did not get better, even when I thought it was finally going away.
When I had my annual physical recently, I asked my doctor, and he looked and said, “Get a biopsy.” I did, this week, and today they called. Yup, it’s a basal cell. Thanks, Dr. L!
Remember how you’ve always heard that a warning sign is “a sore that won’t heal”? I guess they mean it. I kept kidding myself, thinking I was continuing to re-injure it shaving. (Not bright, I know.) Then, just before the physical, I ran across a summer photo, and there it was. So I guess it was there longer than I realized.
I’m going to blog this experience, as I try to practice what I preach: get engaged, learn what I can, explore my treatment options, connect with other patients.
I was thrilled to be engaged by clinician network QuantiaMD to do an “Ask the Patient” feature. (I get a small stipend.) It’s live, and available for public viewing. Free registration is required to view their videos; you can preview the first minute or so of each one without registering.
We often talk (here and on e-patients.net) about patient social networks and how they help spread ideas and information. Well I’ll be darned, it turns out doctors and nurses are doin’ it too, with similar benefits. Who knew? :-) And you know I was thrilled that they’ve added a new feature, “Ask the Patient.” Here’s hoping every clinician community does the same. Let Patients Help!
I’m speaking this morning at the Military Health System conference in Washington. It’s a high-speed panel, with 12 minutes per speaker, so I’m posting here the links to the sites and resources I’ll talk about. (This saves people from scribbling URLs or the frustration of not remembering later … just like getting information in the doctor’s office, eh? Sometimes the Web is useful!)
At bottom is “Let Patients Help” – my 16 minute TEDx talk from Maastricht, in the Netherlands, covering e-patient founder “Doc Tom” Ferguson on self-care, three e-patient stories, and “the e-Patient Rap.” But first, here are the links:
The last ones still here for the belated class photo: host Shwen of Edelman, @TiffanyAndLupis, Siet, Jay @J_Nagy, Christine @bydls, @ePatientDave, Allison @AMBlass, and Jeff
This page contains links to content discussed in the e-Patient Boot Camp today.
I’ll add this to my list of patient communities. This is an important project – we need to build, somewhere, a publicly available community list that patients everywhere around the world can access. Some sites on my community page are starting, but we have a long way to go.
Here’s an example of why – a true story from tonight’s email.
Tonight a friend emailed me, grumbling about the utterly useless responses a relative had received, trying to find out the latest thinking about the beneficial effects of bicycling for Parkinson’s patients. He’d even contacted one of the biggest-name hospital/clinics in the world, intentionally doing the e-patient “best practice” of seeking the best authority, and had only gotten links to useless news clips:
This is really interesting (snarl). My brother has what I would call early PD. A bad and recalcitrant tremor is his main problem. He is a lifelong athlete – marathons and triathlons. He is HIGHLY self educated in the research on PD. His question is: is the ‘forced’ aspect of the bike pedaling a critical factor in achieving the result? The reason is that 90 rpm is not ‘forced’ for him – it’s easy. But faster than 90 rpm and he bounces off the seat.
He has not been able to get an answer even from researchers. There may not be one yet, but here is Cleveland Clinic’s disappointing response – send him 2 news videos with utterly superficial treatment of the subject!!
Blew my mind. We have a long way to go, Dave.
———- Forwarded message ———-
From:
Date:
Subject: Biking PD study
To:
I asked the Cleveland Clinic if the pedaling had to be “forced” to have benefits. I got a canned response to look at these two videos. I did not find the answer after viewing them–did I miss something? Looks like immediate results that remain for days/weeks. Wadda ya think?
The P2 Collaborative of Western New York is one of the communities of the Robert Wood Johnson “Aligning Forces for Quality” project. (I just realized I’ve never written about this excellent project! Must fix. They’re smart, methodical, data-driven and effective. There are 16 communities in the Aligning Forces project, and P2 is one.)
The P2 people are just brilliant – they’ve taken my e-Patient Boot Camp idea, intended for industry, and are breaking it down into packages for consumer/patients and for clinicians. Here are some links from today’s session with clinicians:
Corrections added Jan 10 as noted. See sections marked “Update 1/10″. See also my comment tonight on today’s disgusting experience of trying to sort this out, and our ultimate rescue.
I often hear about how patients are a major part of the cost problem – their “non-compliance,” their wanting everything they can get, wanting it for free, etc. So, let’s see what happens when a patient who wants to help cut costs gives it a try. …
In that case I tried to fathom a so-called “Explanation” of Benefits, which was in fact unfathomable. (The FTC forced cigarette makers to be truthful in labeling; can’t they force insurers to stop using “explanation” on something nobody understands?)
This time my wife and I are shopping for vaccines. Specifically, shingles. And trying to be a responsible consumer turned out not to be easy.
