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Self-Diagnosis and Participatory Medicine

The Journal of Participatory Medicine has published an interesting piece on Self Diagnosis, subtitled A Discursive Systematic Review of the Medical Literature. It’s a complex subject – as patients become more informed and empowered, they are more liable to want to have a role in diagnosis, and more apt to question a doctor’s perception or framing of their condition. This isn’t new for some of us – thirty years ago I was disagreeing with my physician to the extent that he would prescribe to treatments, one based on his assessment and one based on mine.

The systematic review published in the JOPM turned up 51 articles, of which 38 were suitable for inclusion in the review. There are three assessments of self-diagnosis: that it’s reliable and desirable (31%), that it’s not reliable but still desirable (23%), or that it’s neither reliable nor desirable (29%).

I’m sure the assessments depend to some extent on context and personality, which varied in the papers assesed. One significant problem considered in the discussion is that “self-diagnosis obviously challenges the authority of medicine, an authority which may already be in decline.”

A decline in medical authority is not necessarily a bad thing, even from medicine’s perspective. The notion of self-care and the changing nature of the doctor-patient relationship have been lauded as positive changes in the health system.

The article goes on to discuss how the patient/doctor relationship was historically “characterized by an authoritative, paternalistic doctor managing the care of the submissive patient.”

With respect to patient self-diagnosis, the modern patient clearly would participate in diagnostic decision making, but not necessarily with ease. The ability to assess quality and reliability of health information is not necessarily within the grasp of most lay people, presenting a difficulty on two fronts. On the one hand, any attempt to mediate access to information, or to recapture control of its delivery will infringe upon lay autonomy, returning the patient to the paternalistic care of the omniscient physician. On the other, consuming information without adequate understanding results in individual vulnerability for both patient health and the doctor-patient relationship.

I think this gets to the challenge we face in advocating participatory medicine, but the same challenge is inherent in any democratization of knowledge: to participate, you have to be able to make informed decisions – you have to be informed, and you have to be capable of understanding the information that’s accessible to you. The real source of empowerment may be, not just in the education and participation of the patient, but in the mutually empowering relationship of physician and patient.

The article concludes “that there are no clear binaries to guide the incorporation of self-diagnosis into contemporary health management.”

It is a complex matter, because it is a relational one, tightly bound up in the ways lay people and doctors position themselves and interact relative to one another and relative to particular disease categories.

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