Too many years witnessing the same thing. First in the ACOR system. Then 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 US 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% are African Americans. It is too easy for all of us to forget about this disturbing fact!
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 2 major conferences on Health2.0 and Connected Health I have this feeling in my stomach that the situation is only getting worse over time. I 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 other. Clearly 2 different agendas for these 2 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 2 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.