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When It Comes To Communicating With Patients Sometimes It Helps To Go Back To The Future

I’ve never had a study rock my world and change my perceptions as much as this one.  As I reported earlier this year, an analysis funded by the United Kingdom’s Economic and Social Research Council (UKESRC) found that many online health searchers skip content from government and corporate sources in favor of information developed by their peers.  

I was so struck by this finding that I’ve been talking about this study with clients, in lectures, workshops and other public and private forums.  However, the question remains: why?  UKESRC had a few answers to this question, but I recently came across a study published nearly a decade ago that provides another compelling one.  


Back To The Future

In 1996, an article appeared in the journal Medical Anthropology Quarterlydelorean.jpeg focusing on the hidden cultural biases and assumptions that influence how medical experts develop patient educational materials.  The paper’s author Diana Forsythe observed that rather than empowering patients, a computerized system designed to help migraine sufferers reinforced preconceived notions and did not address the questions they wanted answered.  In addition, the system’s developers did not acknowledge that patients have a great deal of useful knowledge about migraines.  They:

-“[A]ssumed that knowledge about migraine means biomedical knowledge, that is, formal general information of the sort found in medical textbooks.”
-“[B]elieved that migraine sufferers who are not physicians lack knowledge about migraine.”
-“[Concluded] that the information needed by migraine sufferers was biomedical information.  They expected patients to want physiological information about migraine and about the side effects of drugs used to treat it.”

Forsythe’s work with patients revealed they had very different information needs.  She observed: “[M]igraine sufferers expressed a desire to know about a broad range of topics involving migraine, beginning with the apparently universal secret fear, ‘Do I have a stroke or brain tumor?’  Much of what they said they wanted to know about their condition was informal and/or specific knowledge rather than textbook material. Of particular importance to people living with migraine was the problem of translating formal medical knowledge about migraine and its treatment into information that they could apply in their own lives, a factor that seems related to patient compliance" [emphasis mine].

Forsythe’s Work Gets To The Heart Of Disconnect Between Expert Assumptions & Patients’ Real Information Needs

While Forsythe’s study was published nearly a decade ago, we can see how her findings relate to the UKESRC analysis.  Could much of the content developed by government agencies, corporations and other official sources be rooted in the same cultural assumptions and biases Forsythe highlighted in the 1990s?  Are online health searchers reacting – either consciously or subconsciously – to these biases?  Do they favor information from their peers because it addresses their “secret fears” about their (or their loved ones’) health? 

What Can We Do About This Problem?

Identifying and compensating for the cultural biases and assumptions of health experts (and by extension communicators) will be difficult.  The methodologies employed by health marketers can be helpful.  This is because they understand that any communications effort needs to be proceeded by research into the attitudes and behaviors of their target audience.  However, fully solving this problem will require the health and medical establishments to rethink how to conduct patient education.

I will be talking more about this subject at the upcoming CDC Conference on Health Communication, Marketing & Media taking place next week. 

Many thanks to Susannah Fox of the Pew Internet & American Life Project for sending me an excellent e-book focusing on Internet empowered patients titled, e-patients.  Forsythe’s paper is highlighted in this publication.

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