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

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'.

'A limpet on a ship': Spatio‐temporal dynamics of patient and public involvement in research

“…Madden and Speed's characterization of the operations of PPI as an ‘empty signifier’) 44 . Furthermore, our findings draw attention to the professionalization of researchers – an under‐examined issue in research on PPI, even as such research features extensive discussion of the liminal position of PPI contributors and the consequences of their potential professionalization 45‐48 . Indeed, the routine use of the term ‘researchers’ or ‘academics’ in PPI research obscures the complex professional power relations structuring academic work and applied research in particular – although some work on this is now emerging 49 .…”

“…44 Furthermore, our findings draw attention to the professionalization of researchers -an under-examined issue in research on PPI, even as such research features extensive discussion of the liminal position of PPI contributors and the consequences of their potential professionalization. [45][46][47][48] Indeed, the routine use of the term 'researchers' or 'academics' in PPI research obscures the complex professional power relations structuring academic work and applied research in particular -although some work on this is now emerging. 49 In discussing the acculturation of the junior researcher, we show how meetings produce researcher identities by honing ECRs' institutional fluency through their engagement with technical apparatuses and absent/imagined actors.…”

The impact of public involvement in health research: what are we measuring? Why are we measuring it? Should we stop measuring it?

“…Similarly, a recent study of the development of public involvement in a London based mental health biomedical research centre reported that: “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’” [ 51 ] . …”

How to make study documents clear and relevant: the impact of patient involvement

“…Patient and public involvement is required for UK publicly funded health research, with researchers describing their involvement strategy. 2 , 3 Patient and public involvement is defined as ‘research carried out with or by members of the public rather than to, about or for them’, 4 where the public, patients and carers are active partners in research. 5 Traditional research models often confine patients to the end of the research ‘pipeline’, but ensuring collaboration across all stages can improve study outcomes, identify appropriate research questions and reduce ‘research waste’.…”