Expert patients

Idea came from Prof Kate Lorig, rheumatologist in US. Trained lay educators had better outcomes than conventional clinic appointments. In 2001, became an NHS programme, aimed at cutting costs of chronic disease.

Technology has aided this massively – see “E-patients“. But of course variations in access to technology and tech literacy.

Patient centred networks not well understood. Can have links to health professionals, but can also be tied to industry/commercial interests, may even be driven by industry.  Online resources scored higher with e-patients for convenience, emotional support, empathy, death and dying, in depth medical information, practical help.  Specialist physicians rated highest for diagnosis, technical knowledge (just), managing condition after diagnosis.  So online resources score highest where medics poorest and vice versa.  So combination of both ideal!  Also, medics come and go.  Some patient groups have published their own research eg GIST group.

But behaviour change, specifically when talking about self-efficacy, is very individual and psychology focussed. Less exploration of social influences, other than focus on peer modelling.

Foucault, of course, was fascinated by how people can become obedient, self governing, and how this is produced by the efforts of “pastoral power”, in a similar way to the Christian church and the process of confession.

Trisha Greenhalgh would say that although collaboration between patient and doctor is important, it’s still just one aspect of a whole system that includes community, material conditions, law/policy, social deprivation, cultural norms etc.

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