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. 2020 Apr 17:6:12.
doi: 10.1186/s40900-020-00185-7. eCollection 2020.

Between funder requirements and 'jobbing scientists': the evolution of patient and public involvement in a mental health biomedical research centre - a qualitative study

Joanne Evans  1 , Stan Constantina Papoulias  2
Affiliations

Between funder requirements and 'jobbing scientists': the evolution of patient and public involvement in a mental health biomedical research centre - a qualitative study

Joanne Evans et al. Res Involv Engagem. .

Abstract

Background: In the UK, there has been a strong drive towards patient and public involvement (PPI) in health research. Its benefits include improvements in the quality, relevance and acceptability of research, and empowerment, self-respect and value for service users. Organisational context can significantly influence the operationalisation of PPI. Research has highlighted power asymmetries between clinicians, researchers and service users. A resistance to power sharing, tokenism and assimilation into the existing culture suggest that a consultative, technocratic form of PPI is operating within health research settings. The aim of the study was to explore the development of PPI within a London based mental health biomedical research centre (BRC) over a period of 10 years from its inception.

Methods: This qualitative study compared data from 52 organisational documents and 16 semi-structured interviews with staff and service users associated with PPI within the Maudsley BRC. The data were analysed using inductive thematic analysis. Study design, data collection, analysis and write up were conducted by service user researchers.

Results: Our analysis showed a picture of increasing activity and acceptance of PPI, its alignment with the broader BRC research agenda, progressive involvement of service users in governance, and the development of a collaborative culture in research processes. The presence of salaried service user researchers in the organisation was key to this progress. However, PPI remained localised and under resourced and there was a reluctance to change working practices which resulted in perceptions of tokenism. Service users faced conflicting expectations and were expected to assimilate rather than challenge the organisation's 'biomedical agenda'.

Conclusions: Service user researchers may play a key role in establishing PPI in a scientific, hierarchical research environment. Adoption of a more democratic approach to involvement would build on the good work already being done and help to transform the culture and research processes. However, such an adoption requires considerable changes to the funding and policy environment orienting health research.

Keywords: Biomedical research; Knowledge translation; Mental health; Patient and public involvement; User led research.

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Conflict of interest statement

Competing interestsJE is currently funded by the BRC while SP was funded by the BRC prior to the study’s undertaking (between 2012 and 2014). SP is currently Assistant Director of the Service User Research Enterprise, a research unit mentioned in the study.

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