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 - 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 telephone survey Harris Interactive conducted in July.
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 last month 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 health software company that owns and operates ICYou.com.
"The Web continues to challenge preconceptions we have," Jenkins said. "There are a lot of people who totally want you to see their injury. They want to talk about their doctor, they want to talk about drugs they took that are relevant, and they want to tell their story."
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.
"On one level, it's ongoing live outcome study. 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.
"With a few exceptions, there hasn't been a huge amount of venture funds thrown at this. There isn't irrational exuberance," said Matthew Holt, organizer of the Health 2.0 conference in San Francisco and author of the Health Care Blog.
Holt said he's seeing business partnerships forming among social networking sites and employers, patient organizations and other groups. He said he expects to see different business models develop as the industry matures.
What's not in question, Holt said, is growth potential among consumers.
"The problem is the MySpace and Facebook generation is not yet in heavy health care use, but people with chronic diseases are going online," Holt said. "As the Facebook and MySpace and LinkedIn population grows older, they're going to get sicker and need this stuff more."
Social networking health sites
These sites are among a new wave of social networking services available for patients to share experiences and learn more about their disease:
-- DailyStrength.org: Gives patients and caregivers a place to join a support community, write a journal, share videos, and send virtual hugs and flowers.
-- ICYou.com: Patients and health care providers tell their stories and share information in video clips.
-- NursesRateDoctors.com: Recruits nurses to give their candid assessment of doctors.
-- OrganizedWisdom.com: Aligns doctor-reviewed and user-generated health content to help people make decisions.
-- PatientsLikeMe.com: Allows patients with Lou Gehrig's disease, multiple sclerosis and Parkinson's disease to share response to various treatment options.
-- RateMDs.com: Physician rating site has more than 350,000 reviews, allowing patients to "give your doctor a checkup."
-- ReliefInSite.com: Helps patients record and track their pain and medications and share it with their doctors, nurses, pain specialists, therapists, friends and family members.
-- ZocDoc.com: Enables patients to book appointments online with their doctor or dentist. (Currently restricted to dental appointments in Manhattan.)
Source: Chronicle research
Patient voices
"Aside from a job that I love, I have a wonderful husband of 21 years, a terrific 20-year-old son, a loving family, a little house in the woods, a dog, two cats ... and a diagnosis of Parkinson's disease. What a surprise that was! I'm trying to be positive and look at this as an opportunity to learn, but some days I fail at that." - patient profile by "ukelady," a 47-year-old La Honda woman (posted on PatientsLikeMe).
"Thanks for the reply, michK! Great to "meet" ya! :) I hope the Remicade continues to work for you. Hang in there, okay?" - an "eHug" from "TheUnderCat," a 55-year-old Louisiana woman with rheumatoid arthritis, to "michK," a 24-year-old Kentucky woman suffering from the same disease (from DailyStrength).
"Hope is the best medicine. If you can go in and sit with a person and really be with them like people had been for me ... the HIV wouldn't be like the end-all. It would be like this is a part of life. Like this has happened, so what? Let's pick up and go on with it." - Charlie Johnson, HIV-positive since 1992 (in a video posted on ICYou.com).