title: A multi-sited ethnography of patient and public involvement in epilepsy research
Creators: name: Deja, Elizabeth
Publisher: name: University of Liverpool Repository
Year: 2014

description: Contemporary health policy and funding bodies are placing increasing emphasis on patient and public involvement (PPI) in healthcare and health research, advocating PPI in all stages of the research process. Currently, however, there is limited empirical evidence critiquing different approaches to PPI or exploring its associated benefits and challenges. Without this information researchers and patient/public representatives cannot make informed decisions about best practice. The principal aim of this thesis was to generate a detailed understanding of the implementation of PPI in health research. To accomplish this broad aim, I focused on a specific health condition, epilepsy, and the research structures underlying health research in the UK, namely, research networks. I achieved this using a multi-sited, ethnographic approach, incorporating multiple qualitative data collection methods, including 47 interviews, 35 observations, fieldnotes and document analysis. My in-depth thematic analysis of the data found that PPI is conceptualised in terms of ‘meaningful’ and ‘tokenistic’ involvement by those engaged in the process, rather than how it is depicted in the current models of involvement. Having first explored these terms I identified five components that can help to ensure that PPI is meaningful and not tokenistic. Having compared and contrasted multiple approaches to PPI I conclude that there is not one single ‘best approach’ for implementing PPI. Rather, to achieve high ‘quality’ PPI there is a need to incorporate seven methodological factors that overarch approaches and ensure that there is an alignment of approach and purpose. Both the professionals and the patient/ public representatives within my research appeared to be highly aware of the moral and political motivations of PPI, but were primarily motivated by pragmatic or consequentialist reasons. Professionals were motivated almost exclusively by the goal of improving the applicability or relevance of the research. This goal was important for representatives too but they were also motivated by a range of personal reasons, including the wish to feel they were making a difference; the opportunity to learn about epilepsy and epilepsy research; and the opportunity to interact with others. The perceived benefits of PPI were also identified and discussed in depth, and appeared to be largely congruent with those reported in the literature. However, my work has identified some challenges and barriers around PPI that have not previously been explored including: adverse emotional effects; organisational practicalities; concerns about ‘representativeness’ and ‘tokenism’; the ‘blurring’ of roles and the erosion of patient-clinician boundaries. I conclude by recommending that there should be an increased focus on appropriate, ‘meaningful’, involvement rather than endeavouring to implement PPI in all stages of the research process, as currently advocated in policy documents. The insights into the challenges of PPI that my work has provided will allow them to be addressed from the outset, improving the PPI experience and consequently the likelihood of PPI being successfully implemented.