Pharma's Facebook

Pharma's Facebook

Research 2.0: How drug companies are using social networks to recruit
patients for clinical research.

Sarah Kliff

Newsweek Web Exclusive

Like most social-networking sites, Inspire.com is a place where users
talk about the most intimate details of their lives. They want advice on
coping with stage III cancer or to offer encouragement to a mother
deciding about life support for her premature baby. But Inspire's nearly
100,000 users aren't just sharing with each other (and the 62 nonprofits
who partner with the site), they're also receiving targeted information
from pharmaceutical companies who use the site as a recruiting tool for
drug studies. Opening this door between patients and drugmakers has some
obvious benefits but also raises a host of ethical and medical dilemmas.

On the plus side, those grappling with serious or chronic diseases get
to hear about clinical studies and new treatments that they might not
otherwise know about. Pharmaceutical companies get easy online access to
highly engaged populations with specific medical conditions. "One day we
come to you and say, 'There's a clinical trial going on, here's some
information, now it's your decision.' It lets the patients raise their
hand and say, 'I want to participate'," says Inspire's founder, Brian
Loew. Social networks not only allow pharmaceutical companies to hone in
on extremely specific populations, but also enable them to reach
patients who live far from major medical centers and typically never
hear about studies.

Recruitment has long been a bottleneck in medical research. Of the
approximately 50,000 clinical trials currently underway in the United
States, 80 percent are delayed at least a month because of low
enrollment. One problem: potential trial participants are often
skeptical and worried about safety. "There's an increasing wariness
about the pharmaceutical industry and the clinical trial process," says
Ken Kaitlin, director of the Center for the Study of Drug Development at
Tufts University in Boston. "It's not uncommon to hear about drugs taken
off the market because of major safety problems ... that makes the
public a little more concerned." Pharmaceuticals hope they can overcome
such fears by building partnerships with social networks that they can
mine for potential volunteers.

Loew launched Inspire in 2005, and spent the first three years building
up members in partnership with nonprofits, including The Lung Cancer
Alliance and National Organization for Rare Disorders. Now, with a core
group of users on the site, two major pharmaceuticals have begun
recruiting for clinical trials, one in the lung-cancer community and one
in arthritis. Inspire has partnerships with two other major
pharmaceuticals in the works. The drug companies pay Inspire a flat fee
for the recruiting service; the Web site's compensation does not hinge
on meeting a particular recruiting goal.

Three of the four pharmaceuticals working with Inspire declined to
discuss their interest in social networks, or even reveal their names.
The fourth, Merck, declined multiple requests for an interview but did
issue a brief statement on their commitment to "rapid and effective
enrollment of appropriate patients into trials" as to allow for "timely
development of innovative medicines."

Novartis, one of the first drugmakers to engage research participants
through a social network, partnered with PatientsLikeMe.com to recruit
clinical-trial subjects for a multiple-sclerosis drug in 2008. "[Social
networking] hadn't been applied to clinical trials," saysTrevor Mundel,
head of exploratory clinical development at Novartis. "At the time, we
were having a lot of difficulty enrolling patients."

In May 2008, the site sent out a message to the 8,000 members of their
multiple-sclerosis community, alerting them to the Novartis trial. From
that e-mail, nearly 1,500 members visited the Novartis Web site. After
recruiting through PatientsLikeMe.com, Novartis saw a boost in
registrations for the study, although they did not track which or how
many individuals enrolled because of the campaign-due to patient privacy
concerns. "The registration did start to pick up," says Mundel. "We
don't have the tracking, but I've got to believe some of it was
generated by the e-mails."

Nonprofits and government agencies remain hesitant about recruiting on
social networks because they see them as a relatively untested medium.
TrialCheck, a database of both private and public cancer studies, is
interested in using social networks, but is holding off until they have
more information. "Cancer patients should know all of their treatment
options, not just a select few trials that are promoted," says Dianne
Colaizzi, spokesperson for the Coalition of Cancer Cooperative Groups.
"Another issue is how do patients discern the quality of the information
they find on social-networking sites? Many of the sites lack high
quality medical information from trusted sources."

Another problem: the reliability of data that comes from trials where
the participants may be communicating with each other. That doesn't
usually happen in medical studies. But if your study subjects are on the
same social-networking group, what's to stop people from swapping enough
information to figure out which of them is on the real medication vs.
the placebo, essentially "unblinding" the study?

"If you know what to expect because you're going online and seeing
what's happening [with other patients], the result is that the data
could come out biased," says Paul Bleicher, the CEO of a health-tech
startup in Cambridge, Mass., who has written on the role of social
networks in medicine. He doesn't think that pharmaceutical companies
have yet thought through these issues. Novartis's Mundel admits they
haven't figured it all out yet. "It's something which hasn't been worked
through, how [social networks] might worsen the accuracy of
adverse-event reporting," he says. "That's one concern we have to think
about and still don't totally understand."

Despite these drawbacks, clinical-trial recruitment on social networks
is expected to increase. Inspire says that it is signing up 100 new
members a week. As Bleicher writes in a recent article in Applied
Clinical Research, "Technology is here to stay, and it will bring
changes in communication and interactivity that we can't even
anticipate, along with many opportunities and some risk."

But as with all things Web, when things go right, the power of
connecting people is formidable. Take Susan Love's Army of Women, a site
that launched in November 2008 to solicit volunteers for preventative
breast-cancer research. The site capitalized on the
grassroots-organizing powers of the Internet and, largely through
members inviting friends, has amassed more than a quarter million
members that researchers can recruit for research exploring potential
risk factors for breast cancer.

The site is not a social network (although that may come soon), but does
take advantage of many innovative Web 2.0 tools, like blogs written by
researchers describing their study and how Army of Women members are
having an impact. But even if Army of Women does become a social
network, they're operating to collect information for prevention, not
testing the effectiveness of drugs on various conditions, so they're
less likely to run into problems where data is compromised by the
interaction of patients.

Perhaps most important, this site has been able to reach hard-to-find
but willing research participants including Theresa Passerelli. The
60-year-old hospital accountant lives in Warm Springs, a tiny town in
central Georgia with no stoplights or grocery stores. She's 70 miles
from a major medical center, but is participating in important
breast-cancer research on sisters of women with breast cancer. "You have
the walkathons, but those don't advance science," says Passerelli. "When
I saw the Army of Women, I was more than willing to give them my body
and let them do whatever, if there's a possibility there will be some
kind of breakthrough."

URL: http://www.newsweek.com/id/187882