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Studying Those the Study Us: The Collected Writings of Diana Forsythe
I first met Diana Forsythe at the 1992 annual meeting of the American Medical Informatics Association. She was one of the few people I'd met who shared my interests in Information Technology's potential to empower patients.
Diana told me about a recent study she'd done in which the physicians caring for migraine patients had little idea of their patients' chief concerns and thus did a woefully inadequate job of dealing with their information needs. Most of the patients had never even asked their doctors the question that concerned them most during the long painful attacks they sometimes experienced-"could I die of this?" Since the doctors all knew that no one dies of migraines, they considered this a trivial and irrelevant concern and somehow discouraged questions about it. This is just a single illustration of the general theme that emerged from her work: Provider-designed patient education systems tend to embody the developer's perspectives rather than the patients'-to the extent that they often increase the patient's dependence on professionals rather than truly empowering the end-user.
Over the months that followed, Diana and I had several wonderful long conversations about the need to understand and rethink some of the tacit assumptions of current healthcare system as a necessary prelude to attempting to computerize it. And so, like many of her other friends and colleagues who had been impressed by her brilliance and touched by her intellectual generosity, I was heartsick, some years later, when I learned that she had drowned in a raging river while backpacking in Alaska.
A group of her concerned colleagues, worried that her remarkable articles and talks might be lost, banded together and convinced Stanford University Press to publish a volume containing her collected works. The book, long in preparation, has been recently published. It is entitled: Studying Those Who Study Us: An Anthropologist in the World of Artificial Intelligence, by Diana E. Forsythe (Stanford University Press, Stanford, CA, 2001 ISBN 0-8047-4203-0).
If you are a clinician or medical informatics professional interested in developing effective IT systems for patients, I strongly suggest that you order this book today. And when it comes, turn directly to Chapter Seven: "New Bottles, Old Wine: Hidden Cultural Assumptions in a Computerized Explanation System for Migraine Sufferers." This may be the most insightful paper ever written on the subtle difficulties that typically arise when doctors try to build IT systems designed to be used by patients.
To build effective online health systems for end-users one must combine the knowledge of a medical professional, the skills of a programmer/developer, the perspective of a medical anthropologist, and the wisdom of Solomon. And since Solomon is not currently available, an insightful social scientist like Diana-who can help us see our current healthcare practices from a 'man-from-mars' perspective-can offer invaluable insights.
Selected quotes & summaries:
"Both builders and users of [CHI] systems tend to think of them simply as technical tools or problem-solving aids, assuming them to be value-free. However, observation of the system-building process reveals that this is not the case: the reasoning embedded in such systems reflects cultural values and disciplinary assumptions, including assumptions about the everyday world of medicine."
"The system-builders systematically excluded the possibility that many of the migraines in female patients might be related to domestic violence, even though the ethnographers' interviews suggested that this was indeed the case."
"The team included two physicians from the migraine clinic, but no nurses-even though the nurses had more contact with patients and more experience and expertise at patient education. And even though four of the non-physician members of the development team suffered from migraines, in the meetings, they spoke only in their professional roles, and never in their private personae as migraine sufferers." [Diana found this especially troubling because in private interviews] "they had eloquently described to me the pain and fear of their migraine attacks and the failure of biomedicine to provide them with significant relief, a story heard over and over again in the course of the study." [They thus allowed the physicians, neither of whom had migraines, to speak for all migraine patients-even though it was clear, from their own private stories, that they seriously disagreed with the physicians regarding what migraine patients know and want to know, they never publicly contradicted the physicians.]
Published in The Ferguson Report, Number 8, January 2002
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