Page 48 - Health Literacy, eHealth, and Communication: Putting the Consumer First: Workshop Summary

Health Literacy, eHealth, and Communication: Putting the Consumer First: Workshop Summary

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information found online and expressed a need for assistance in interpret-
ing the health information.
One of the major barriers to seeking mainstream health information
that the focus groups identified was suspicion and mistrust of the medical
community, as illustrated with the following quotes: “I think one of the
keys is that there is money involved. It is all about greed.” “Those of us
who are African-Americans are still grappling with the Tuskegee studies
and the aftermath. So there are a lot of historical monsters with which
we identify when it comes to medical community treatment and medical
residents.” “Then that leads me to conclude that there is just a lot of gen-
eral information that we are not getting. There seems to be a mainstream
level of information which gives you stuff to lead you into drugs, different
things like that . . . there is like a whole stream of other viable alternatives
that could work but you don’t even hear about because it will blow all
the mainstream drugs out.” “The pharmaceutical companies are in bed
with the FDA.”
When members of the focus groups were asked what sources of infor-
mation they trust, their answers included (ranked from most-mentioned
to least-mentioned: their mothers; folk and alternative medicine (“grand-
mother’s cures”); the health care provider; and, finally, the Internet.
Everyone was aware of the importance of lifestyle, diet, and stress as con-
tributors to health, but they expressed a general frustration with attempts
to improve in these areas.
Using these data as background for understanding community atti-
3
tudes, the HHPC project set out to build a Web portal that Harlem resi-
dents would use. The conclusion was that the Web portal platform would
need to do more than deliver health information, even if it were at a lower
health literacy level, the portal would have to encourage a level of trust
and cultural relevance as its foundation.
Developing the Web portal involves more than just developing con-
tent and images aimed at a particular literacy level. What HHPC realized
is that the portal needs to facilitate an architecture of participation such
as that found on Web 2.0, including such tools and services as blogs, RSS
feeds, and wikis. These different Internet instruments are examples of
4
self-organizing structures where the principle of evolution will lead, in
the course of time, to correct and complete content.
Table 3-2 provides a comparison of the principles of Web 2.0 tech-

3 “A Web portal is a term, often used interchangeably with gateway, for a World Wide Web
site whose purpose is to be a major starting point for users when they connect to the Web”
(MariosAlexandrou.com, 2008).
4 RSS (Really Simple Syndication) feed. “A syndication format that was developed by
Netscape in 1999 and became very popular for aggregating updates to blogs and the news
sites. RSS has also stood for ‘Rich Site Summary’” (PC Magazine, 2008).

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