Objective To investigate health researchersÕ attitudes to involving the public in research.Background Public involvement in research is encouraged by the Department of Health in the UK. Despite this, the number of health researchers actively involving the public in research appears to be limited. There is little research specifically addressing the attitudes of health researchers towards involving the public: how they interpret the policy, what motivates and de-motivates them and what their experiences have been to date.

Article:Boote, J., Ward, P.R., Thompson, J. et al. (4 more authors) (2009) Critical perspectives on 'consumer involvement' in health research: epistemological dissonance and the know-do gap.

Contemporary health policy in England places increasing emphasis on patient and public involvement (PPI) in health and health research. With regard to the latter, it has been suggested that PPI brings 'different' perspectives to research decision-making spaces, based on what has been referred to as 'experiential expertise'. This article presents findings from a qualitative study of PPI in cancer research settings in England. We argue that participants highlighted specific forms of expertise in their accounts about involvement, above and beyond experiential expertise, which they felt legitimated their claims to be credible participants within cancer research settings. We report here on the various strategies by which participants sought to accomplish this and highlight, in particular, a concomitant process of 'professionalization' of some within our group of participants. We discuss the significance of these findings in the context of recent debates around the status of experiential expertise.

An enduring theme in the literature exploring patient and public involvement (PPI) in research has been the focus on evaluating impact, defined usually in terms of participants’ practical contribution to enhancing research processes. By contrast, there has been less emphasis on the perspectives and experiences of those involved in PPI. Drawing on qualitative data with people involved in the National Cancer Research Network in the United Kingdom, we report on what motivated participants to get involved and their experiences of involvement in this setting. We highlight how those involved in PPI often espoused the notion of the “good citizen,” with PPI in research being a natural extension of their wider civic interests. However, our findings also highlight how PPI was an important resource, utilized by participants to make sense of living with chronic illness. We suggest that PPI in research also offers spaces for the reconfiguration of self and identity.

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