NeuroTalk Parkinson’s Group Brings About Change at Michael J. Fox Foundation
Our savvy e-patients over at NeuroTalk noticed the launch of a new service by the Michael J. Fox Foundation, one of the leading Parkinson’s disease advocacy and research organizations. The new service, called PD Online Research, is billed as a “new web community of scientists, industry professionals, grantmakers and financial investors dedicated to advancing the treatment, prevention, and cure of Parkinson’s disease.”
Notice a group missing from that list?
So did the members of NeuroTalk, who called the Michael J. Fox Foundation on the carpet for not including patients in this conversation at the onset.
CNN’s “Empowered Patient heroes” recognizes Tom Ferguson and Gilles Frydman
Today’s entry in the CNN.com “Empowered Patient” series, by medical correspondent Elizabeth Cohen, is titled Empowered heroes’ hard lessons now help others:
This week, as we reflect on American heroes, we’re saluting a few “patient empowerment” heroes, whose experiences with the health system have inspired them to help others.
I’m someone who has personally benefitted from the road these pioneers paved and lit, so I’m very glad to see the growing public awareness of their vital work.
The column’s details page includes stories of ordinary people who, not unlike America’s founders, had experiences that left them feeling that “we the people” could create a better reality with a new balance of power. They set out to create a newly empowered citizenry, and they did. Consider:
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.
Two Research Papers Published on PatientsLikeMe
Two research papers were published this month on the Health 2.0 website, PatientsLikeMe. PatientsLikeMe is arguably the only “real” health social network online today, because it lets patients share actual data that matters with one another — their personal health data. (Other supposed health social networks seem more focused on the “social” than the “health,” allowing for little integrated data sharing.)
The two research papers provide some interesting data points and insights into both the disease process itself, and how e-patients are using Web-enabled tools such as PatientsLikeMe to improve their own care.
The Wisdom of Patients Report
The California HealthCare Foundation published a report the other day entitled The Wisdom of Patients: Health Care Meets Online Social Media (PDF) which is a nice overview of the current state of Health 2.0. The report is four chapters long: Social Networks Come to Health, What is Health 2.0?, The Business of Social Networks and Health, and What’s Next for Social Networks and Health? More inside…
E-patients Unite To Document Problems with Generic Drug
For over 30 years at The People’s Pharmacy, we have been guided by a respect for people’s ability to make informed decisions about their health. We have always welcomed input from consumers, but we had viewed our website as an information dissemination system: we posted articles and readers posted comments. That was the extent of the interactivity. We had never used the site as a beacon of e-patient activity – until now.
E-patients have recently drawn national attention by documenting significant problems with a generic drug - problems that the FDA hadn’t caught. …
Wikipedia’s Arcane Rules Censor Health Information
I don’t know of a living soul who views Wikipedia as any type of authoritative resource. Why? Because no single person takes responsibility for any article’s content or quality. Some articles are heavily and well-edited, while others are much less so. At any given moment, you can’t say whether an article you’re reading is the highest-quality version on that topic or not. You can hope it is, but you have no easy way of knowing or telling.
What happens when you edit something going against one of 43 Wikipedia’s esoteric editing rules? (Wikipedia refers to these rules as “policies,” including the gem that every one of the policies can be ignored it if “hinders improving Wikipedia.” I can only assume that’s a relatively subjective standard.) It usually gets reverted fairly quickly. Oh, and you’d better read up on the over 65 style “guidelines” too, because if you violate one of those, you’ll find your edits lost more quickly than you can say “Engorged bureaucracy.”
Wikipedia has gone from “An encyclopedia ANYONE can edit!” to “An encyclopedia that you may be able to edit, if you follow all of our rules and don’t argue with us. Even if you’re an authoritative expert in the field.”
Recently, Gilles Frydman, head of the non-profit cancer support community ACOR asked the Wikipedia editing community that links to e-patient medical communities should be allowed as an exception to the guideline that links to forums should not be allowed. (By the way, this same rule discourages links to any site that requires even a free registration to view the content, ruling out links to most major newspaper articles that could give additional valuable information on the topic.)
NON-Practicing Patients
It took me a few days to digest what was troubling me with the New York Times Magazine article. The efficacy of the ACOR groups is based in part on the dual fact that patients and caregivers members of the online communities NEVER behave like they are replacing their treating physicians and NEVER practice medicine. At a maximum they provide to peers valid medical information, often difficult or impossible to find anywhere else.
That is a fundamental element of participatory medicine. All those involved, including the patient, are equal partners in the patient care. And they all must know their roles and the limit of what they can individually achieve. As Larry Weed explained:
The idea of “my doctor”, the all knowing graduate of a credentialed university medical school must be abandoned. In travel, we do not talk about “my pilot”, we talk about the airline system of which the pilot is only one part, and his role is sharply defined and rigorously monitored.
While e-Patients and e-caregivers fill-in many of the gaps in the continuum of care provided by the various health professionals, they do not replace the parts that work optimally and are never antagonistic, unless the care is sub-optimal. They certainly do not intend to practice medicine. Nonetheless, as informed patients, they can easily become highly efficient case-managers for their own illness.
“Practicing Patients” (New York Times Magazine)
I haven’t dug into this yet, but I will. You?
“Succeeding in online health” lunch meeting
Today outside Boston I attended a “lunch-n-learn” session of the Massachusetts Technology Leadership Council, titled “Patient, Heal Thyself: How to Succeed with Online Consumer Health Sites.” At first I thought it was going to be about creating great health resources, but that’s just my parochial view :-)…. it was about how to make a business success of them.
But I don’t mind that - I’m in business too. And, our own Jon Lester was one of the presenters, talking about the fairly amazing things people are doing in SecondLife with healthcare.
I whipped out the computer and started blogging on my own site (hadn’t gotten in here yet). Two posts: the business case for listening to patients, and takeaways.
white paper
e-Patients:
How They Can Help Us Heal Healthcare
