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technology review September/October 2011
These people have proved that there are
real benefits to sharing the bad news. I think
even more good could be done if everyone,
not just those with serious conditions, were
to share more health information.
Admittedly, this would take some per-
suasion. One practical problem is creating
a context for such sharing, whether inside
ordinary social networks or in dedicated
spaces such as PatientsLikeMe. But there’s
also a more fundamental issue: the deep-
seated belief that talking about illness
diminishes us in the eyes of others.
We recently conducted a survey asking
more than 4,000 PatientsLikeMe users
which parts of their social circles they had
informed of their diagnosis. Patients with
diseases that are visibly obvious, like ALS
or Parkinson’s disease, had spread the bad
news most widely, to family, friends, and
neighbors. However, people with conditions
whose symptoms are more hidden—such
as mental illness, HIV, or epilepsy—were
much less likely to reveal their diagnosis.
Real-life neighbors and connections on
social networks were rarely informed.
The roots of our taboos about health
are complex, but humans seem to have a
“default privacy setting” that conceals illness
from others when possible; it’s overridden
only when our defenses crumble and the
state of our health is plain for all to see.
Society can erect similar barriers. Author
and oncologist Siddhartha Mukherjee tells
us that Fanny Rosenow, a breast cancer
activist in the 1950s, was unable to adver-
tise her support group in the New York
Times because the words “breast” and “can-
cer” were both taboo. We have made huge
strides in medical openness since, but we
still have far to go. We should allow and
encourage people to be more open with the
bad news about their health. Not only will
we advance medicine, but our society will
become less likely to harm or discriminate
against people with health problems.
Paul WickS iS ONe Of thiS year’S tr35 (See P. 40) aNd a
reSearcher at PatieNtSlikeMe, a SOcial NetWOrk fOr
ShariNg iNfOrMatiON abOut life-chaNgiNg illNeSS.
dramatic changes can come from
emerging technology companies
partnered with large industry
players, says Joel Moxley.
The world needs new energy resources—
not only to offset the decline of our
existing reserves but to support the rapid
growth of emerging economies like those
of China, India, Brazil, and Russia. The
International Energy Agency estimates that
resources yet to be developed or discovered
could be needed to account for 50 percent
of conventional oil production by 2035.
Discovering and unlocking those new
resources will require a new generation
of technology to be deployed at a global
scale, and this technology must use exist-
ing infrastructure. That’s not only a tough
technical challenge but one accompanied
by often overlooked challenges of indus-
Whether our innovation ecosystem can
meet those challenges is an open ques-
tion. The energy industry has a (perhaps
undeserved) reputation for deploying
innovations more slowly than others. Most
important, it is not yet known whether the
model of combining university research
with venture capital—so successful in
semiconductors and Internet services—will
deliver real innovations in energy.
Part of the problem is that for energy
technology to reach its full potential, it
must be introduced, tested, and deployed at
a scale attained only by major industry play-
ers invested in methods that already have
a long track record. Conventional wisdom
has it that those companies are not recep-
tive to adopting new technology or work-
ing with emerging companies, but behind
this reluctance are cultural differences that
can be overcome. Working hard to master
these differences has enabled our company
to find experienced partners open to com-
mercializing new technology.
Paul Wicks says sharing
information about your health
can advance medical science
and improve society.
After my wife and I moved from the U.K .
to Boston in 2008, Facebook allowed
us to keep in touch with friends back home.
Yet we read only a stream of good news.
We heard about weddings, birthdays, and
nights out, not cancer scares, depression,
or the baby not brought to term.
This selective, rose-tinted sharing is com-
mon on social networks—except for the one
I work on, PatientsLikeMe. There, people
with conditions from bipolar disorder to
HIV anonymously or publicly share inti-
mate details of symptoms, treatments, and
health outcomes with thousands of people
they’ve never met. We have published stud-
ies showing that this sharing helps our users
become better at managing health problems.
We have also shed new light on the effec-
tiveness of rarely studied treatments, such
as generic drugs and off-label indications.
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8/10/11 5:32 PM
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