By Gilles Frydman
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
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 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.
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 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
Categories: Uncategorized
To Renata’s post, I would also caution around the US-centric view of the digital divide….the same populations absent or in minority positions in the US exist on the global scale. In the age of the participatory web, when will be get to using it communicate with these populations. Technology is always cultured, which is why I think as the participatory web and its offspring continue to grow, there needs to be a diversification in its very forms….. to reach those very audiences…. In our surgeon community, there is an increasing number of international groups being constructed as surgeons reach across the ether for professional insights and resources to support them with local cases. More could be done though, and that is our particular challenge.
Giles:
There is no dearth of African Americans focused on healthcare at-large, and the unique experiences and historical distrust of our system(s). Nor are our healthcare issues marginalized to exclusively AIDS-related scenarios. Magic Johnson has a partnership with Aetna. Harold Freeman M.D. has a partnership with Ralph Lauren for the Ralph Lauren Center for Cancer in Harlem. I could go on, but I think you get my drift. We exist — but, are not a formal part of the business and/or conference communities. What you saw reflected is not at all unusual in the healthcare space as I have experienced it for the last 8 years. I have kept a chronicle of it.
For my part, I have had the privilege of two discussions with our new First Lady when the very idea of Barack winning was not taken seriously by anyone but early (freezing) volunteers in Springfield, IL – let alone those who participate in these conferences. She is not unfamiliar with the zeitgeist you articulated, as a healthcare executive in a major metropolitan hospital. Ditto, the new First Lady of New York State – Michelle Paterson – a healthcare communications executive. I know there will be CHANGE, and I don’t think it will be limited to the transfer of huge sums of monies going to the establishment players, while simultaneously leaving huge segments of the American population marginalized from services, decisions, etc. — and/or business opportunities.
It will be up to the conferences — and the healthcare media/digital/business establishment(s) to CHOOSE to integrate African Americans (and Latinos, Asians, etc.) and the needs of the same –with RESPECT — or not. Michelle Obama and Magic Johnson aren’t hard to find, and — neither is Dr. Freeman or Ralph Lauren. I found them all – and more – quite easily by picking up the phone. They were all very gracious — and shared an understanding of the particular nature of what you described. They KNOW.
The Republican Convention looked very much like these conferences — and, that makes them less relevant than they could be. No industry committed to serve the American people — and requiring huge tax dollars to do so — should accept that standard for themselves.
CHANGE is on deck — or, risk being left behind and less relevent in the future.
Gilles: I’ve been focusing on the digital divide over the past year as it relates to social technologies. In fact, I participated in a teleconference hosted by AIDS.gov recently where I discussed the digital divide and presented data showing that the racial divide is decreasing, but the economic divide remains wide. Specifically, many minority groups use the Internet and many social technologies like blogs regularly. However, they tend to be more affluent. Less affluent people of all races are much less likely to have high-speed Internet connections, use computers or use social technologies.
I agree with you that we need to focus more on the digital divide and what it means for Health 2.0. I know that many people in non-profits and government are looking into this issue. However, I think we’ll need to take a synergistic approach where we understand that using social technologies to reach minority groups is doable, while using traditional media/technology to reach the economically disadvantaged will be required for many years to come.
You can view my presentation and a podcast of my talk here: http://tinyurl.com/47euyy.
On ACOR the percentage of Hispanics was also 1%. But we have no idea if the low participation is due to the same root cause(s).
What about Hispanic percentages? Also 1 percent?
Perhaps now that we have an african-american president we should see some changes….
could it be that a lack of compelling return on $/attention/time invested is felt more acutely by the nonparticipants?
nobody “needs” to attend either conference mentioned, etc