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.
I bet the reason is that everyone’s thinking about “Who pays?” All of the zero-cost self-help off-the-grid peer networks don’t even show up on the radar of those observers.
This is one way an industry can get blind-sided.
Referring to networks like ACOR, Clay Shirky observed that they’re self-sufficient: “Patients don’t need help, and they don’t need permission.”
He also noted that sub-Saharan Africa is a hotbed of health applications that presume the phone is the platform. I’d like to know what those applications look like. It reminded me of Susannah Fox’s seven words of wisdom, which included “Go mobile,” referring to the reality that the majority of the world’s population doesn’t have a PC – the phone is their platform.
Tom Iglehart of Care Commons had a profound observation about a related topic, based on a question he asked at a couple of sessions. (He’s a smart guy and a new fan of the e-patient white paper.) He said he wants to think, and will say something before too long.
Gilles, I agree there could have been a lot more discussion of these issues. For evidence of the deep & varied field, see last spring’s Information Therapy conference in DC where there was an entire track devoted to “Ix and Health Disparities,” chaired by Warren Jones, MD, FAAFP, Executive Director of the Mississippi Institute for the Improvement of Geographical Minority Health.
I wrote about my impressions of that event here last June and I’ve already blocked off April 22-23 for next year’s Ix/Health 2.0 conference.
Just to add another log to the mobile fire:
Some Shed Their Gadgets by Turning to One: iPhone
Wall Street Journal, Oct. 30, 2008
While consumers have long used cellphones to substitute for landlines, U.S. telecom operators have recently also reported sharp slowdowns in the number of households adding broadband lines to access the Internet from home. Verizon Wireless, a joint venture of Vodafone PLC and Verizon Communications Inc., on Monday said it lost 96,000 DSL subscribers in the quarter.
Already, lower-income and older consumers are less likely to subscribe to broadband than average, according to a recent report from the Pew Internet & American Life Project, and 35% of dial-up Internet users cite price as the primary reason for not upgrading.
Others believe that the surge in popularity of the iPhone among lower-income consumers is related more to the decline in price to about $200. “You had this device that inspired gadget lust suddenly put within reach,” said George Calhoun, a professor and entrepreneur-in-residence at the Stevens Institute of Technology in Hoboken, N.J.
At a population level, the advancement of evidence-based HIT/eHealth is, perhaps, the greatest hope that the health care system has with regards to the myriad of its current ailments (lack of consumer engagement, escalating costs, redundancy of testing, safety concerns, limited decision support, etc.). However, without conscious, intentional, specific and ongoing attention by researchers, developers and implementers of HIT/eHealth (and those who spread its “gospel”), the digital divide will expand, not contract. While some believe that time will simply address this problem in terms of new devices, programs and technologies becoming ubiquitous (telephone, TV, etc.), this passive response (or, rather, lack thereof) belittles the fact that the need is too great NOW and requires immediate action. Technology must not become one more means by which the health care system fails traditionally underserved populations (the poor, many communities of color, seniors). And, drawing focused, regular attention to reducing this gap should not only be the responsibility of a small chorus of voices.
Thanks to Susannah for pointing out the 2008 Information Therapy (Ix) Conference’s major emphasis on Ix & Health Disparities. What we wanted to accomplish there was two issues.
1) There’s no doubt that in developing initiatives in Ix (and other patient-centered HIT–the focus of the ’08 conference), we need to address significant barriers that disparities create (both in health and in health care). Everything from inadequate access to electronic tools to low health literacy to non-English language to culturally inappropriate services or education need to be addressed.
2) Conversely, Ix (and patient-centered HIT) also offer special opportunities for us to OVERCOME those barriers if we are creative in thinking about solutions. For example, we not only saw presentations from safety-net providers but from technology companies that created Spanish-language, culturally appropriate IVR/automated phone health education outreach that had dramatic success with Spanish-speaking Latino populations.
In fact, other research we have seen has suggested that low-income and underserved populations often consume health information more intensely (when given access to appropriately tailored info) than the general population. My hypothesis is that demand for health info is fairly consistent (everybody gets sick and wants answers!) but that underserved populations have faced information access barriers that historically has prevented them from getting the right information at the right time.
So Gilles has done a great service by calling out this issue. But just as importantly, it would be a big mistake to throw up our hands and yell “digital divide” and pretend that there’s nothing we can do about it when–in fact–the evidence suggests otherwise.
We can and must address both the barriers and opportunities so that we can improve information therapy–and ultimately health and health care–for everyone.
Josh is right. There is plenty we can do collectively! I was unaware until Susannah’s post that the IxCenter had this emphasis on health disparities. Seeing that Chris Gibbons is part of the faculty is a very clear sign you are treating the issues seriously and are giving access to the best experts in this field.
I would like to add one reference to an article evolving from the Identifying and Disseminating Best Practices for Health e-Communities symposium sponsored by the Robert Wood Johnson Foundation and organized in June 2006 by the UNC School of Public Health.
Susannah, Chris and myself were actively involved in this demanding day were many of us learned, thanks to Chris and many others, about some of the cultural aspects of the digital divide:
The Underrepresentation of African Americans in Online Cancer Support Groups, Joshua Fogel, PhD; Kurt M. Ribisl, PhD; Phyllis D. Morgan, PhD, APRN, BC; Keith Humphreys, PhD; and Elizabeth J. Lyons, MPH.
Yes, Chris Gibbons was excellent, but the full list of presenters with their bios and virtually all of their presentations* is available at http://www.ixcenter.org/events/conference08/materials08.cfm (the Ix & Health Disparities section is toward the bottom of this page so scroll down). Warren Jones and Neil Calman’s will help all of us think more clearly about these issues, and the data on Latino outreach was presented by Elisa Stomski.
There were also some highly relevant presentations from the other track going on concurrently on “The Role of Ix in Enabling the Patient-Centered Medical Home” (I need to figure out why Rushika Fernandopulle’s presentation is not there but we’ll get that corrected soon) and an excellent keynote presentation the day before on “Ix & Health Literacy” by George Isham (not only Chief Health Officer of a progressive, consumer-governed integrated delivery system but also serves as Chair of the IOM’s Roundtable on Health Literacy).
* Unfortunately, some NIH policy prevents them from letting us post their speakers’ slides, which is particularly a shame for the excellent presentation by Kyu Rhee, MD, MPP, Director of Innovation & Program Coordination, NIH Center for Minority Health & Health Disparities.