Web 2.0 consumer health sites in the San Jose Mercury News
Healthy growth in Web 2.0 medical sites
San Jose Mercury News, 9/21/2007
Chatting on DailyStrength.org, LuvNHope was giving migraine-prone EyeLoveDawn an e-hug while KansasGal posted a video-journal entry about her fibromyalgia.
At the same time Thursday – but in the real world – health care blogger Matthew Holt was talking about the promise of DailyStrength.org and other so-called “Health 2.0″ Web sites during a one-day conference bringing together 500 of the growing field’s key players.
At the conference, words like data liquidity, transparency and empowerment were tossed about with abandon, but to translate: Health 2.0 is a buzzword for online ventures that propose to improve people’s health by expanding their access to next-generation Web tools like customized search engines (think Google) and social networks (think MySpace).
Some day, I’ll work out how I feel about patient community sites and write about them.
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September 22nd, 2007 at 3:45 am
Hi, David. You are naughty to be blogging while you are convalescing!
I would be fascinated to read what you have to say about patient community sites. For the past few months, I have participated in one of the biggest of them, Patients like Me:
http://www.patientslikeme.com/
I visit the pages devoted to amyotrophic lateral sclerosis (ALS) and have been greatly moved by the solidarity shown among the patients and caregivers who frequent the site and have made important contacts at it. I have a friend with the condition and via Patients Like Me I learned about an important clinical trial:
http://www.mda.org/research/view_ctrial.aspx?id=182
and was able to communicate directly with the very surgeon who is leading the study:
Raymond Onders MD
Principal Investigator
University Hospitals
Cleveland, OH
And with his colleague in my region:
Charles S Cho MD
Principal Investigator
Stanford University Medical Center
Stanford, CA
who both wrote me the very day I wrote to them after reading accounts by the spouses of patients who had relieved the implants and by a lady then undergoing the evaluation for the procedure who has since had it and with whom I have become friends.
This has been a very uplifting, exciting and worthwhile experience. Not only did I learn of a potentially therapy for someone I love, but I have come to understand the entire world of ALS in terms of the disease-specific disability issues persons with the condition face and participate myself in a reciprocal fashion by noting what drugs are being mentioned on the site, which I then read about in PubMed, posting on Patients Like Me what I learn there about what is under discussion. There is immediacy to Patients Like Me that is compelling and truly revolutionary.
The story of the Heywood family:
http://www.pbs.org/wgbh/pages/frontline/somuchsofast/heywoods/
is itself fascinating and inspiring. They harnessed their love for their ALS-afflicted brother Stephen and their own incredible entrepreneurial drive to found not only an institute spearheading research in ALS:
http://www.als.net/
but also Patents Like Me. All medical librarians should visit it and, I hope, contribute to it thereby employing their expertise in the alleviation of suffering in a very gratifying and life-changing fashion for patients. I keep up on ALS by visiting it. That makes me a better, much more engaged librarian on the subject of ALS and, eventually, on other conditions.