For too many years, I’ve witnessed the same thing. First, it was in the ACOR system. Then it occurred in many conferences about eHealth, e-Patients, and now Health 2.0 and the Connected Health symposium
at Harvard Medical School.
Why is an entire segment of the U.S.
population almost completely absent from the fast evolving world of
Health 2.0 and Participatory Medicine?
The uneasiness has consistently grown since 2004 when we ran our first large in-house survey and discovered
that over 98% of our users are Caucasians and less than 1 percent are African
Americans. It is too easy for all of us to forget about this disturbing
And if we do not force a change there is no reason this sad
situation should change. The mistrust of African Americans for the
medical system runs so deep that it probably explains why they do not
use services as active and efficient as ACOR. But coming back from two
major conferences on Health2.0 and Connected Health I have this feeling
in my stomach that the situation is only getting worse over time.
found both conferences fascinating for what each represented and
presented to their participants. A open window to the many, many
commercial applications that are trying to solve problems in the
delivery of care for the first one. A carefully orchestrated academic
view of how network health systems can deliver better care for the
Clearly two different agendas exist for these two large conferences. But
what I found most striking was the mirror image they presented to the
world: the digital divide was not a topic of specific sessions. It was
only mentioned “en passant” in both by public health experts, such as Judy Phalen of the Health e-Technologies Initiative,
who have been deeply involved in these issues for years. And even more
troubling to me, in 2008, the year where for the first time an African
American is due to become President of the United States, the lack of
representation of the African American and Latino communities, both as
speakers and attendees of the two conferences was blinding.
I hope that we are all going to tackle this problem with a clear
motivation to change this unacceptable situation. From now on every
conference centered on Health 2.0 or Participatory Medicine should
allocate some sessions to the possible solutions to the various
cultural and economic reasons of the digital divide. And the same
should apply to this blog and to the Journal of Participatory Medicine.
Gilles Frydman is a pioneer of medical online communities and founder,
in 1995, of the Association of Cancer Online Resources (ACOR), the
largest online social network for cancer patients. ACOR has served over 1/2 million cancer patients and caregivers. This post first appeared on the blog, e-patients.net