“How can anybody be representative for those kind of people?” Forms of patient representation in health research, and why it is always contestable
Social Science and Medicine
Reason for embargo
Different discourses that co-exist within the world of patient and public involvement in health and social care mirror a tangle of historical, social, political and theoretical roots. These range from the radical activism, born of civil rights movements, to a more passive model in which patients are the recipients of information. This paper explores the concept of ‘representation’ and the ways the concept is used by people serving as ‘patient’ or ‘lay’ representatives in a range of roles within research projects, funding bodies and academic institutions. We address the issue of why the representativeness of those involved is contestable. Drawing on qualitative research and engaged practice as well as on literature from social and political sciences we question how people conceptualise their own and their fellows' acts of representation. In doing this we identify nine different conceptualisations of what it is to represent and use these to explore how judgements are made about what can count as legitimate forms of representation.
The PhD study “Public and Patient Involvement in Theory and in Practice” was funded by the National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care for the South West Peninsula. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health. We would also like to acknowledge the generous contributions of time and thought made by study participants and the Peninsula Public involvement Group (PenPIG).
This is the author accepted manuscript. The final version is available from Elsevier via the DOI in this record.
Vol. 183, June 2017, pp. 62–69