Medpedia - where are the patients??
Medpedia has gotten a lot of publicity in the past week. Considering that Wikipedia has disavowed* usefulness for patients, Medpedia sounds like a potentially great idea. * See Jon’s correction in Comments. –EPD
But when I saw their home page it literally took my breath away: there are invitations for doctors to join, and organizations to contribute content, but nothing for patients – we can contribute ideas, not content.
Well, I clicked the Contribute Ideas link, and you bet I submitted an idea:
An e-Patient Hero Leaves Us
Most of us know Randy Pausch from his video lecture “Achieving Your Childhood Dreams”, taped at Carnegie Mellon as part of their “Last Lecture” series. His hope and optimism in light of a crushing diagnosis brought millions up short as they examined their lives through the lens of this great man at the end of his short life. What you may not know is that Randy was an e-Patient. He was engaged in his own healthcare to the very end and shared his journey freely with the world.
Parade should have asked e-patients
Aside from debunking a crummy column, this is a call to action for journalists.
Today Parade featured a column that appears to be pure flackery. If the editors had done a reality check with a patient community they would have been much better informed, with little extra effort on their part.
Titled You Can Survive Cancer (I Did), the column is by Mark Liponis MD, who had a cancerous kidney removed and now runs a chain of spas. (Why this is featured under the heading “Men’s Health” is beyond me, but let’s not focus on that for now.)
The column doesn’t even touch on the nasty realities of kidney cancer: few effective treatments are available, many patients don’t qualify for the most effective treatment, and even among those who do, only one in five responds to the treatment. (I was one of those lucky few.)
On top of that, “I survived, so you can” is absurd logic for an MD to assert, and cruel to people confronted with a condition that has already in many cases turned their lives upside down. It implies that you wouldn’t be dying if you’d done what he did.
Reaction among e-patients on the ACOR kidney cancer listserv has been strong. Members are insulted by the insinuation that all you have to do is eat superfoods, exercise etc (which are, astonishingly, what Liponis’s chain of spas recommends), and if you get cancer, just get it chopped out as he did, and you’ll be fine.
Here’s part of a note I posted to that list.
Rate a Doctor?
For years Doc Tom urged us to facilitate patients’ publicly rating doctors as a way to accelerate e-pateints movement. Alan (DrGreene) was excited about this, even though he was a physician, but I was afraid it would open Pandora’s box. In the winter of 2006 we had another conversation with Doc Tom about patients rating doctors. I didn’t have a tape recorder, so I can’t quote him, but I walked away understanding that figuring this out needed to be a priority. Tom’s vision was a rating system much like amazon.com for books, Yahoo! for movies, and a thousand other sites for everything from restaurants to mechanics. My concern was that people might only review a physician after they’d had a bad experience and while that information is helpful, what e-patients really want to find out is “who is the best doctor me?”
With Tom’s gentle push forward we formed a relationship with a start-up to create a review database that encourages people to rate their favorite doctors. Shortly after our time with Doc Tom we had a conversation with Gale Wilson-Steel, founder of CareSeek. She was very excited about getting patients to review doctors, but Alan shared with her an idea he’s long held – nurses have a birds-eye view of physicians and are able to evaluate medical knowledge, patient rapport, and skill. With our prompting, Gale founded a companion company — Nurses Rate Doctors. Both sites share a database to create a comprehensive pool of physician ratings focusing on identifying and reviewing the best doctors in every specialty. Nurses are offered incentives such as free (very cool) CME opportunities to encourage them to share their observations.
And now it’s here — DrGreene.CareSeek.com is open to all, as a place for anyone looking for a great doctor and everyone who wants to rate the doctors they know. For this tool to really be effective, we need people (just like you) to review your doctors. So login now! It’s quick. It’s easy. And it will make a difference.
Thanks Doc Tom. You’re still making a big difference!
Cheryl Greene, Co-Founder and Executive Producer, DrGreene.com
May Old Acquaintance Be Recalled
Since it is the season for “Auld Lang Syne” and reconnecting with old acquaintances is an internet pastime, I wanted to link to a wonderful article by Wayne Cooke, a stage IV colon cancer survivor and true e-patient.
I haven’t seen him in many years, but because of online storytelling, I am up to date on the Cooke family’s travels & travails and newly aware of how flagging down a plane in Paris can prepare one for facing down colon cancer.
Should Ordinary People Give Medical Advice Online?
Wow is all I can say. When I came across this discussion on MetaTalk, the discussion site for an old community blogging site called MetaFilter, I was taken aback.
The discussion is about how “wrong” the people who responded to a request for opinions and advice about a mental health issue were. The post was written by a physician, naturally, who suggested there should be greater caution in people offering their opinions (and even diagnoses) on medical or mental health issues where they don’t have a full and complete history.
Now, of course, on the face of it, this makes common sense. Nobody, not even doctors, like to go around offering their opinions about things on the basis of little information. But sometimes that’s all we have to go on, and people just want some ideas.
I don’t honestly think that at the end of 2007, anybody goes on to any “Ask” or Q&A site asking about a professional concern (whether it be medical, mental health, legal, plumbing, electrical, relationships, career, etc.) and not know that a lot of the responses they will receive will be non-professional and “from my own personal experience.” That’s one of the joys of Web 2.0 — everyone can be and often is an expert.
Some communities, like Yahoo Answers, have built-in tools to help readers rate answers they feel best capture a legitimate and useful answer to the question posed. It is these kinds of tools, and not disclaimers or efforts to clamp down on answering mental health or medical advice questions, that are the future. Because people will always ask such questions, it’s just a question of where they do it and whether such an environment can provide tools or options to make it a good, safe environment.
Wikipedia as an e-patient source
Read this quote and think about which industry is being admonished:
“We cannot, however, continue to reject Wikipedia because we aren’t comfortable with the wiki process itself… To be quite frank, continually bad-mouthing Wikipedia to the very people who use it—successfully—makes us look a bit daft. It would be much more productive to teach [people] how to best use Wikipedia.”
I excised “colleagues, students, and parents” from the quote since I think you could swap in “patients,” “customers,” or “voters” just as easily.
Read the whole column by Chris Harris in the School Library Journal for more on how Wikipedia actually resembles the early days of the Oxford English Dictionary.
The Voice of the Patient
This January 12, 2005 interview with Don Berwick, at the Health Affairs web site, underlies the importance of doing all we can to make the “voice of the patient” directly accessible-to the press, health policy planners, government officials, and medical professionals.
Like many of us, Don has now concluded that positive healthcare reform will not come from within the health care system, the medical profession, or the federal government. I think that we are edging closer and closer to a crowing consensus that the only hope for successful healthcare reform lies in understanding and leveraging the e-patient revolution.
There’s a deficiency of will and ambition in the major centers of power in the delivery of health care in America. We do not have a shared aim to raise the bar in performance. That’s the problem
External pressure will be necessary to move the system toward meaningful change.
I don’t care so much what the doctors say. I care what the patients say.
The voice of the patient… the eloquence of the patient to speak up about what they need and want, is so powerful. We haven’t invited patients to speak up enough. [We need to provide] a megaphone for the patients. It’s [all about] storytelling; it’s hearing that this patient was in my hospital and this is what they went through. We need to create a space for patients to talk about things like that. Because, sooner or later, it’s going to be me or my child.
white paper
e-Patients:
How They Can Help Us Heal Healthcare
