Abstract
BackgroundIn 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.MethodsThis 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.ResultsOur 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’.ConclusionsService 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.
Highlights
In the United Kingdom (UK), there has been a strong drive towards patient and public involvement (PPI) in health research
Service user researchers may play a key role in establishing PPI in a scientific, hierarchical research environment
Over time there was an increase in user involvement, including participation of service users in the governance of the organisation and more work in PPI to advance the biomedical research centre (BRC)’s research priorities
Summary
In the UK, there has been a strong drive towards patient and public involvement (PPI) in health research. The organisational and personal benefits of PPI in health research are well documented They include improvements in the quality, relevance and acceptability of research [2,3,4] increases in ethical practice [5, 6] raised awareness and acceptance of research among the research community [7] as well as empowerment, self-respect and value for service users [8, 9]. In this context there are indications that involvement practice remains tokenistic [15] and underpinned by a technocratic rather than a democratic rationale This means that involvement of patients and the public is researcher rather than user-led and is sought in the hope that it may improve research quality and treatment cost efficiency rather than challenge existing power structures and engage citizens in decision making [16, 17]. This marginalisation may be marked in mental health research since healthcare professionals who may be conducting the research are those who can make decisions over service users’ mental capacity, compulsory treatment and detainment [9, 19,20,21]
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