For these startups, patients are a virtue

For these startups, patients are a virtue

Sites with spirit of Web 2.0 encouraging people to share thoughts on illnesses, doctors

Victoria Colliver, Chronicle Staff Writer
Monday, October 1, 2007

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).

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