Page 50 - Health Literacy, eHealth, and Communication: Putting the Consumer First: Workshop Summary

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

PAneL

sible to question the motives and intentions of the communicator (Stamm
and Dube, 1994). A study by Baldry and colleagues showed that when
health professionals actively encourage patients to view their own health
records, it helps restore patient trust in the medical system (Baldry et al.,
1986). Therefore, if the gatekeeper (e.g., the provider or hospital) moves
out of the way and enables patients to view direct, unmediated informa-
tion, that will improve the patients’ level of trust in the provider.
As mentioned previously, the Digital Partners in Health project uses
participatory action research (PAR) methods. The key goals of PAR are
to produce knowledge and action that are directly useful to a group of
people and to empower people at a second and deeper level through the
process of constructing and using their own knowledge. Web 2.0 tech-
nologies can serve as an informatics approach to facilitate the principles
and characteristics of PAR in disadvantaged populations. If one examines
why PAR works, one finds that its principles are very similar to Web
2.0—-that is, enabling the community itself to become part of the process,
to communicate and participate, instead of using a closed technology
driven by experts.
Developing the contents of the portal has involved a number of dif-
ferent types of individuals: technology developers, community people,
informaticians, and public health people. There has been a great deal of
negotiation among them about how much of the content on the portal will
be unmediated (out of the control of experts) versus how much of it will be
mediated. Some of the technology specifications, developed on the basis of
user input, include the following

• Website content can be viewed by anyone but users must register
to post or comment on the site’s content.
• Registered users can:
� submit their own blog (e.g., “How I quit smoking after ten
failed attempts”) or create special interest groups and social
networks, each with its own discussion forums;
� post events of interest, links to useful health resources, or
participate in several special programs, such as the Harlem
YMCA-sponsored Fitness Challenge; and
� rate posts made by other users or flag posts as inappropriate
(community policing and appraisal).
• An overall moderating team consisting of our experts as well as
users will provide editorial control to ensure content quality.

The resulting website (gethealthyharlem.org) is not static. For exam-
ple, there are RSS feeds of Harlem-specific health news where mem-
bers can post comments and debate the news online. The website is not

Copyright National Academy of Sciences. All rights reserved.