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"Participatory Medicine" and Its Relationship to Clinical Lab Testing

Posted Jul 02 2009 6:32pm

We should encourage healthcare consumers to actively participate in their own healthcare. The web will be a very important factor in this process by providing access by consumers to sophisticated healthcare information. Web-based personal heath records (PHRs) constitute another key element in consumer self-care by providing them ready access to their electronic health records. Web sites that enable consumers to order lab tests for themselves (the so-called direct access testing or DAT sites) are another facet of this approach to healthcare. One can use Health 2.0 (see: Introduction to Health 2.0) to refer to consumer-directed healthcare but Kevin Kelly make reference to what may be a better term -- participatory medicine. Below is an excerpt from his web site describing his involvement in this area (see: Journal of Participatory Medicine ):

I've long been interested in medical self-care. The idea of patients taking responsibility of their own health and healing seems to me to be essential in the long run. [My web site] Quantified Self was started in part to collect a certain kind of tool that... might give you data which could be used to maintain or improve your health. Data measurement is only one way to improve your health, and it should certainly not be the only way. The main thing is that health is your job, and doctors and hospitals are your assistants and advisors, but to live this way requires a lot of education, skills, and support. I'm not the only person to head in this direction and for the past three decades a large number of dedicated doctors, public health agents, self-care journalists, and patient activists have been working on all kinds of ways to increase the role of informed patients. The newest channel in this effort is the launch of a peer-reviewed science journal dedicated to research in the field of "participatory medicine" -- as in patient participant. (Sometimes labeled Health 2.0) 

There is a important link between direct access testing (DAT) and PHRs. Some of the web sites offering DAT services provide access to a free on-line PHR. This service originated back to the days when tethered PHRs such as HealthVault had not yet been offered. I think that tethered PHRs will ultimately triumph over the untethered ones because they will contain both "official" health records generated in physician offices and hospitals as well as data entered into the record by the consumer himself or at his direction. DAT lab test results would fall into this latter category. Direct access lab testing enables the consumer to compare self-ordered test results with those generated in an office or hospital setting. In this way, the consumer can monitor the status of his health or chronic diseases at more frequent intervals than may be available during office or hospital visits . Such self-monitoring by lab testing goes to the heart of participatory medicine.

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