The Expert Patients Programme: a paradox of patient empowerment and medical dominance

Abstract

Self-care is seen as a key element in managing resource demand in chronic disease and is also perceived as an empowering right for patients. The Chronic Disease Self-Management Programme developed in the USA has been adopted in a number of countries and in the UK has been as adapted as the Expert Patients Programme. However, despite its potential as a lay-led empowering initiative, the Expert Patients Programme has been criticised as perpetuating the medical model and failing to reach those in most need. This paper revisits a critique of the Expert Patients Programme, and drawing upon a qualitative study seeks to explore whether the Expert Patients Programme enables empowerment or replicates traditional patterns of the patient-professional relationship. A grounded-theory approach was adopted utilising focus groups, in-depth interviews and participant observation. Data were analysed through the constant comparative method and the development of codes and categories. Conducted in the relatively affluent area of the south-east of England, this paper draws on data from 66 individuals with a chronic illness who were knowledgeable, active and informed. The study revealed a number of characteristics common to expert patients that were linked to a systematic, proactive and organised approach to self-management, a clear communication style and the ability to compartmentalise emotion. The study included participant observation of an Expert Patients Programme and a professional-led self-management course. The paradoxical nature of the Expert Patients Programme was revealed, for whilst there was evidence that it reinforced the medical paradigm, there was a concurrent acknowledgement and support for the subjective experience of living with a long-term condition. Furthermore, whilst the policy emphasis has been on individual empowerment within the Expert Patients Programme, there is some evidence that it may be triggering a health consumer movement.