Comments on: Web 2.0 consumer health sites in the San Jose Mercury News http://davidrothman.net/2007/09/21/web-20-consumer-health-sites-in-the-san-jose-mercury-news/ Exploring Medical Librarianship and Web Geekery Tue, 09 Mar 2010 17:40:24 -0700 http://wordpress.org/?v=2.8.6 hourly 1 By: Hope Leman http://davidrothman.net/2007/09/21/web-20-consumer-health-sites-in-the-san-jose-mercury-news/comment-page-1/#comment-119729 Hope Leman Sat, 22 Sep 2007 07:45:21 +0000 http://davidrothman.net/2007/09/21/web-20-consumer-health-sites-in-the-san-jose-mercury-news/#comment-119729 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. 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.

]]>