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Tag: e-patients

Medicine meets Wiki

There’s a new wiki in the health social media town, Medpedia.

Among the most popular online sources for health information is Wikipedia. Millions of people search Wikipedia daily for insights into medical conditions, drugs, and procedures. Medpedia estimates it will cover information on at least 30,000 conditions/diseases and 10,000 drugs.

Now comes the announcement of a sharply-focused wiki from the most credible of academic health institutions: Harvard, Michigan (my alma mater), Stanford, UC-Berkeley, and a host of other highly-branded health associations and stakeholders including the NIH, the CDC, and the FDA.

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Using professional societies to advance participatory medicine

Dan Hoch is a neurologist based at Massachusetts General Hospital
and an assistant professor at Harvard Medical School. An early
developer of online resources for patients, Dan helped found Braintalk.

Professional medical societies are not quite like the secret society Skull and Bones at
Yale University, but they may well look that way to many patients.

In most cases, their sole reason for being is to serve their members in a pretty narrowly defined way. These services generally include continuing medical education programs, an annual meeting, promoting research, advocating for public and political awareness of the value of the specialty, providing resources to support clinical practice, and more mundane perks like access to group insurance (malpractice and otherwise).

If you define the mission of the society a little less narrowly, and it’s not hard to see how that mission can be aligned with that of participatory medicine. We often argue on the e-patients blog that full participation of all parties in health care will yield better, more efficient care. Such care will benefit the members of a professional society. Further, patients are taking part in research not just as guinea pigs, but as organizers and directors. This benefits the societies’ research missions. But, are medical societies poised to understand this, and if so, how do we guide them?

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How patients get the best care

What are the social and psychological factors that affect how people are treated — or
even their health outcomes? This question has popped up in my reading and in my work quite a bit this week, and so I wanted to share what I have learned from three leading thinkers: Peggy Orenstein, Dr. Jeffrey Lin, and Dr. M. Chris Gibbons.

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Universal access to high speed Internet

Achieving universal Internet access may happen well before we see universal access to health care — at least if the advocacy group Internet for Everyone has its way.

The Mercury News reports that a "broad coalition of Internet business leaders, online gurus, community organizers and advocates across the political spectrum launched a campaign Tuesday with the lofty goal of universal high-speed Internet service."

The group is driven by the ideals that "Everyone must be connected to a fast, affordable and open Internet connection to prosper in today’s economy and participate in our democracy. The Internet is no longer a luxury. It’s a lifeline."

Increasing access to broadband Internet is obviously important to
expand the use of personal health records and other health 2.0
technologies, but on a more basic level it’s key to eliminating health
disparities.

Communicating and informing people about their health and major health care issues are integral parts of eliminating
health disparities. And that communication increasingly occurs
electronically on the Web. So expanding access to affordable Internet
and improving public health go hand in hand.The coalition will
hold forums around the nation and try to build support for plans that
improve access, choice and innovation. To learn more about the movement
or participate in upcoming hearings, you can email the organizers at contact@internetforeveryone.org.

Internet expert fields questions on participatory medicine

I always suspect that audience members have as much to share as I have to say. So when Mary Madden and I received an invitation to speak at the National Institutes of Health we created a participatory talk about participatory medicine: 35 minutes of our findings; 45 minutes of discussion.

It was a blisteringly hot day, so we ended up having 50 people in the room and about 50 more watching the videocast from the cool of their offices on the NIH campus. The video is a little blurry, so I recommend treating it like a podcast and downloading the slides separately, but you might enjoy hearing how we wove together our research on digital footprints, Web 2.0, and health.

Here is a sample of the excellent questions we were asked and our attempts to answer them:

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Podcast with Marston Alfred, founder and architect of SugarStats

Marston Alfred, founder and chief architect of SugarStats.com chatted recently with me about his relatively new, Web-based program that allows diabetics to track their health statistics online.Sugarstats_2

Alfred described SugarStats as a portable PHR specifically for diabetics. He hopes diabetics use it to share their progress with others, such as family and doctors, and that by doing so it will improve their adherence to diet, exercise and medication schedules.

SugarStats launched publicly a year ago. It currently has about 4,000 users and gets an average of 10,000-20,000 unique visitors each month.

A diabetic himself, Alfred talks about the need for SugarStats and his hopes for the company’s future. Listen to the podcast.

E-patients can and will revolutionize health care

By taking advantage of new online health tools, e-patients and health professionals
now have the ability to create equal partnerships that enable individuals to be equipped, enabled, empowered and engaged in their health and health care decisions.

That was the vision of Dr. Tom Ferguson, who coined the term e-patients and launched e-patients.net in 2006. Ferguson intended to upload his book-length overview of the online health revolution, “E-patients: How They Can Help Us Heal Health Care.” But unfortunately, he died a month later 2006, after losing a fifteen-year battle with multiple myeloma.

Following Ferguson’s death, a group of his friends and colleagues completed the paper and adopted the blog to carry on his work, as well as our own. Each blogger brings a different perspective when commenting on Health 2.0 developments.

We think the “E-patients” paper remains relevant in 2008 (PDF, wiki) and we hope to extend the findings into the future. To that end, we are also working on the creation of the peer-reviewed Journal of Participatory Medicine with the help of Sarah Greene of the New York Times; Bruce Shriver, PhD, of the Liddy Shriver Sarcoma Initiative; and George Lundberg, MD, of Medscape. We welcome your comments and suggestions.

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Analyzing the benefits of PatientsLikeMe social network site

Two research papers were published this month on the Health 2.0 Web site, PatientsLikeMe. PatientsLikeMe is arguably the only "real" health social network online today, because it allows patients to share actual data that matters with one another — their personal health data.Patientslikeme

(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 the disease process itself and how e-patients are using Web-enabled tools, such as PatientsLikeMe, to improve their own care.

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