Seattle doctor urges colleagues to get involved in online forums

Most people go online to update Facebook, watch a funny
video, or check on Kim Kardashian or some other favorite
celebrity. But more and more doctors and researchers are
exploiting the internet to collect and share crucial
insight into disease, treatments, and side effects.

The amount of medical information is exploding.

“It is now becoming very, very possible, if not probable,
that in the online patient and caregiver communities this
information is coming out faster than the docs can keep up
with it,” said Dr. H. Jack West, lung cancer specialist at
Swedish Cancer Institute in Seattle.

Dr. West is the founder of an online clearinghouse for
cancer information, CancerGrace.org. He says the Internet
has the potential to give medical professionals valuable
feedback and help patients better understand their
diseases. But Dr. West says many online medical forums
devolve into limited testimonials or gripe sessions that
focus on best and worst outcomes of a medication or a
treatment.

“That’s not the same thing as seeing how 100 or 1,000
people do on a treatment,” he said.

Dr. West is urging more physicians to take an active role
in providing solid information for Internet communities.

“The Internet is a great way to spread all sorts of
information, some of it good, some of it not as good, and
the key is to have enough of a presence of the people who
have some expertise in judging the quality of the
information to kind of mediate that so it’s not just
spreading ‘Jenny McCarthy-level’ information,” said Dr.
West.

More researchers are using Internet forums and social
media to gather anecdotal information about medicines and
treatments and explore areas that need further study. For
example, how are patients responding to nutritional
supplements, what are the unknown side effects of certain
drugs? One researcher says the Internet is a source of
information epidemiology, what he’s dubbed
“Infodemiology.”

Dr. West is skeptical, saying the Internet is of limited
value, for now, when it comes to research, saying “the
subset of people who are online and participating in the
websites may have an unusually good or an unusually bad
experience with a treatment,” said West.

At a June convention for The American Society for Clinical
Oncology, the biggest cancer meeting of the year, Dr. West
will urge his colleagues to get off the Internet sidelines
and embrace burgeoning online forums and social media,
saying “we can’t abstain and just cede the whole territory
to people who are loud.”

Dr. West thinks the real value for Internet research is
mining big data concepts, aggregating lots and lots of
experiences, and looking for themes, as opposed to one
person sounding an alarm on a possible red herring.