One of the multiple contributions of OA is the removal of price barriers that prevent many people (especially patients, their families and friends, and perhaps their physicians and other caregivers) from having convenient access to the primary quality-controlled research literature. The major challenge for OA advocates is to foster ways to enhance access to the peer-reviewed literature, mainly for the benefit of other researchers and scholars, but also as a source of evidence-based information for everyone else. The term “Information Therapy” (Ix) has been used as a label for the provision of such evidence-based information by doctors or other healthcare professionals.
However, there’s another kind of information, based on “experiential data“, that can also be of great value to patients and their families and friends. This is information based on the personal experience of individuals with their own illness, or that of people close to them. Judy Feder has used the words “the wisdom of my peers” to describe such “experiential data“. See her comment on: When is “Information Therapy” Simply Learning?, e-patients.net, April 7, 2009.
The current definition of Information Therapy in Wikipedia is: “Information therapy is a healthcare term, describing the timely prescription and availability of evidence-based health information to meet individuals’ specific needs and support sound decision making“. This entry in Wikipedia is currently marked as in need of revision. For example, this warning is currently attached to the entry: “This article may contain wording that promotes the subject in a subjective manner without imparting real information“.
For an interesting discussion of the meaning of terms like “Information Therapy” and “Health 2.0”, see the full text (including the many comments) of: When is “Information Therapy” Simply Learning? by John Grohol, e-patients.net, April 6, 2009.
Two examples of comments:
Gilles Frydman on April 7th, 2009. Excerpts:
Hopefully soon we will all agree that there are at least 2 parallels medical realms. The main one (in terms of number of patients and costs) which starts mostly as a perfect algorithm. It’s the famous medical world of the big chronic diseases. (Many thanks to David Kibbe for expressing this so well in a recent blog post).
Then the second one, where things are completely different. No algorithm. A world of darkness where patients have to become aware that most of the clinicians are half-blind and know very little. That is of course where systems like ACOR shine and save countless lives. That is also where the principle of Information Therapy falls completely flat.
Thinking that your general practitioner will provide you better information about testicular cancer than the very well organized patient-centered and patient-produced information sites like the TCRC (Testicular Cancer Resource Center http://tcrc.acor.org) is ABSURD! The doctor should just say “Go to TCRC” and be done with the Information Therapy portion of their encounter. And not be reimbursed for that wonderful piece of advice.
[There’s a reference to “ACOR” in the above excerpts. For information about ACOR, see: About ACOR, Patient-Centered Wikis].
Gunther Eysenbach on April 7th, 2009. Excerpts:
I don’t think Ix was originally conceptualized as “self-prescription”. Rather, Ix seemd to target the “intermediary”.
Now in my view, Health 2.0 / Medicine 2.0 is almost the exact opposite, opening a new way to inform people and to inject trust – without a “trusted intermediary”, by harnessing peers, the wisdom of the crowds, etc., who are in many cases BYPASSING the trusted expect/authority/intermediary. I have called this apomediation (http://bit.ly/yRoXX http://bit.ly/6E5qL). In the apomediated environment, trust and credibility is earned not through authority and formal degrees, but through first-hand experience (”street cred”), etc.
Comment: At present, journals continue to provide, via peer-review mechanisms, a crucial “trusted intermediary”. “Apomediation” provides an alterative. An excerpt from the abstract of Gunther Eysenbach’s article (http://bit.ly/yRoXX): “It is hypothesized that in an apomediated environment, tools, influential peers and opinion leaders are the primary conveyors of trust and credibility. In this environment, apomediary credibility may become equally or more important than source credibility or even message credibility.” Perhaps the OA movement in general, and Open Access News in particular, provides examples of an “apomediated environment“?