Analysis

Patient and public involvement in chronic illness: beyond the expert patient

BMJ 2009; 338 doi: 10.1136/bmj.b49 (Published 17 February 2009)
Cite this as: BMJ 2009;338:b49

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  1. Trisha Greenhalgh, professor of primary health care
  1. 1University College London, London N19 5LW
  1. p.greenhalgh{at}pcps.ucl.ac.uk
  • Accepted 15 October 2008

Coping with a long term illness requires much more than medical management. Trisha Greenhalgh looks at different models of patient involvement and argues that we need a wider approach

It is a truth universally acknowledged that patients with chronic illness should be involved in their care. It is also increasingly accepted that the public (as individuals, communities, and the voluntary sector) should be involved in designing, delivering, and evaluating services for chronic illness and in creating the conditions to support healthy living. In this article I examine these truths about patient and public involvement from four different perspectives: self management (drawing on biomedical and cognitive psychology), coping (sociology and narrative traditions), whole systems approaches (social ecology), and critical public health (table⇓). The article is based on my own reflections and analysis, but draws on several systematic reviews and meta-analyses on self management, patient empowerment, and community empowerment, as well as literature on illness narrative.1 2 3 w1-w16

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Different perspectives on patient and public involvement in preventing and managing chronic illness

Why involve patients and the public?

Involving patients and the public in preventing and managing chronic illness is advocated for many reasons. In a qualitative review of 73 publications in the German literature, Dietrich identified four framings of the “modern” patient in the clinical encounter4: law and ethics (patients have a legal or moral right to autonomy and self determination); knowledge and information (patients can access information and should be supported to do so); quality improvement (patients can drive improvements in the healthcare system through informed choice), and health economics (patients could reduce healthcare costs—for example, by taking on tasks previously done by professionals or spending their healthcare budget more judiciously). Three additional framings, which focus on the citizen or person at risk rather than the patient, are evident in the wider …

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