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WBUR's Martha Bebinger reports this morning:
A Cambridge-based website that brings patients together to talk about their disease, treatments and medications is expanding. The site, "PatientsLikeMe" has been limited to people coping with one of 22 conditions. Starting today, it's open to patients who want to discuss any health issue, says co-founder Ben Heywood:
"Patients are really suffering, in many cases, from multiple conditions. And I think this will allow them to add and share those conditions and really target and find more specifically a patient like them."
Patient feedback on the site is used in medical research and by pharmaceuticals firms that help fund the project.
PatientsLikeMe is a Web 2.0 pioneer, an early demonstrator of just how powerfully the Internet can create online communities of people with shared interests. It began with a Newton family's tragedy — a young man's fatal diagnosis of Lou Gehrig's disease — and now continues to explore new territory in Internet uses for health. As they tell it:
PatientsLikeMe was co-founded in 2004 by three MIT engineers: brothers Benjamin and James Heywood and longtime friend Jeff Cole. Five years earlier, their brother and friend Stephen Heywood was diagnosed with ALS (Lou Gehrig’s disease) at the age of 29. The Heywood family soon began searching the world over for ideas that would extend and improve Stephen’s life. Inspired by Stephen’s experiences, the co-founders and team conceptualized and built a health data-sharing platform that we believe can transform the way patients manage their own conditions, change the way industry conducts research and improve patient care.
The Heywoods' story is also portrayed in the film "So Much So Fast" and in the book "His Brother's Keeper" by the excellent science writer Jonathan Weiner. PatientsLikeMe has also been featured in The New York Times, including one story that pointed out that such sites raise issues about the "e-patient" phenomenon. Back to today's news. From the PatientsLikeMe release:
Cambridge, MA—April 11, 2011—Today, PatientsLikeMe (www.patientslikeme.com) announces the expansion of its platform and invites patients with any condition to join.
The five- year-old free online health data-sharing website was previously only available to patients with 22 chronic conditions (including ALS, Parkinson’s disease, HIV, depression, epilepsy, fibromyalgia, multiple sclerosis and organ transplants).
In February, the company closed to new members and allowed its 100,000 members to test out its new design and upgraded functionalities, such as adding multiple conditions (or co-morbidities) to their health profiles and measuring their mental, social and physical well-being (or quality of life).
“Every ten seconds on our site, a patient shares an answer to a survey question about their health. Approximately every minute, one of our members is viewing another's profile to see these answers. It's clear patients see the benefit of sharing deep health information,” says President and Co-founder Ben Heywood. “We’re excited to see how this openness and sharing will potentially change thousands more lives as we open the doors to every patient today.”
Since launching in 2006, members of the website have shared data on more than 9,700 treatments and 4,800 symptoms related to their chronic conditions. During that time, PatientsLikeMe also received requests from 23,000+ patients asking the company to “build a community” for more than 5000 conditions, everything from the more commonly known conditions like rheumatoid arthritis, autism, diabetes and cancer to rare diseases like ankylosing spondylitis and Niemann-Pick disease.
This program aired on April 11, 2011. The audio for this program is not available.
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