Web sites encourage patients to share on illnesses, doctors
By VICTORIA COLLIVER, San Francisco Chronicle


Health-care startups are modeling themselves after YouTube and social-networking sites such as MySpace in an effort to connect patients with each other and help them navigate overwhelming amounts of medical information available online.

• At DailyStrength.org, people can choose among 500 support groups – from celiac disease to pulmonary fibrosis – and create an online journal to chronicle their disease and send electronic hugs to other members.

• The new ZocDoc.com lets patients book physician and dentist appointments online, similar to the way OpenTable.com allows diners to make online reservations for restaurants.

• RateMDs.com takes a page from consumer rating sites like Yelp and RateMyTeachers.com – a popular site that allows students to "grade" teachers and administrators – by allowing patients to anonymously praise or pan their doctors.

Americans have searched for medical information online since the Web's early days, but the numbers are growing. Now 160 million U.S. adults have at one time or another searched for health information online, up from 136 million in 2006 and 117 million in 2005 – a 37 percent increase over two years, according to a July telephone survey by Harris Interactive.

While patients have connected online via disease-specific chat rooms and personal blogs, a new wave of companies is using next-generation Web tools to make it easier for patients to find each other and conduct better searches.

"The reason people are going to social networks has evolved. It started with just wanting to connect with people, and now it's 'I want to see if the drug I've been taking has been effective in a group of patients similar to me.' It's become more sophisticated," said Dr. Indu Subaiya, organizer of a San Francisco conference held recently on social networking in health care, and founder of Etude Scientific, a San Francisco biotechnology and life-science consultancy.

Larger players such as Yahoo have hosted online patient communities, as have health-information sites like WebMD. But this Web 2.0 generation of social networking and specialized search engines offers patients tools – user-generated video, blogs, online collaborations called wikis – familiar to users of Facebook and podcasting crowds.

Dubbed the YouTube of health care, ICYou.com allows patients to share their stories through online video clips. The site, which is expected to formally launch late this year or early next, already has about 1,500 posted videos.

While not everyone may want to discuss intimate health problems in an online video, a surprising number of people want to share their experience, said Shawn Jenkins, chief executive of Benefitfocus, a South Carolina company that owns and operates ICYou.com.

Cathy Leaf, a 40-year-old mother of three from Los Angeles, is active in several community groups available through DailyStrength, a Los Angeles company that launched in April.

Leaf, whose mother died nearly two years ago from Alzheimer's disease, found the site's Alzheimer's board, but then became active in bereavement and parenting groups.

"You join a lot of these support groups because it's nice to know that you're not the only one this is happening with," said Leaf, who uses the screen name "cath." "With three kids, I don't have time to run around to all these different support groups. I like to be able to tap into that resource when I need it, and it doesn't have to be scheduled."

Other Web sites, such as PatientsLikeMe, offer people battling devastating diseases the ability to discuss and track in great detail the treatment options other patients in their disease group are trying.

The Cambridge, Mass., company was started by the brothers of a young man diagnosed with amyotrophic lateral sclerosis, a fatal neurodegenerative condition known as Lou Gehrig's disease. It is currently active for patients with ALS, multiple sclerosis and Parkinson's disease, but is soon expected to include HIV/AIDS and other diseases.

"It's real-time, real-world information about what patients are taking and how they are doing on those drugs," said Ben Heywood, chief executive of PatientsLikeMe. Heywood's brother, Stephen, died of ALS in November at age 37.

Heywood said PatientsLikeMe, which recently received $5 million in angel and private equity money, is working on a sustainable financial model. But the future of many of these new social networking companies in the field is unclear.

Advertising from pharmaceutical and medical-device manufacturers and health insurers appears to be a natural revenue stream. But the founders and watchers of these companies say such ads may make patients question whether they can trust that the site's information is not influenced by such sources.

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