Involving the public in mental health and learning disability research: Can we, should we, do we?

WHAT IS KNOWN ON THE SUBJECT?: UK health policy is clear that researchers should involve the public throughout the research process. The public, including patients, carers and/or local citizens can bring a different and valuable perspective to the research process and improve the quality of research undertaken. Conducting health research is demanding with tight deadlines and scarce resources. This can make involving the public in research very challenging. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: This is the first time the attitudes of researchers working in mental health and learning disability services towards PPI have been investigated. The principles of service user involvement in mental health and learning disability services may support PPI in research as a tool of collaboration and empowerment. This article extends our understanding of the cultural and attitudinal barriers to implementing PPI guidelines in mental health and learning disability services. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: Researchers in mental health and learning disability services need to champion, share and publish effective involvement work. Structural barriers to PPI work should be addressed locally and successful strategies shared nationally and internationally. Where PPI guidelines are being developed, attention needs to be paid to cultural factors in the research community to win "hearts and minds" and support the effective integration of PPI across the whole research process. ABSTRACT: Introduction Patient and public involvement (PPI) is integral to UK health research guidance; however, implementation is inconsistent. There is little research into the attitudes of NHS health researchers towards PPI. Aim This study explored the attitude of researchers working in mental health and learning disability services in the UK towards PPI in health research. Method Using a qualitative methodology, semi-structured interviews were conducted with a purposive sample of eight researchers. A framework approach was used in the analysis to generate themes and core concepts. Results Participants valued the perspective PPI could bring to research, but frustration with tokenistic approaches to involvement work was also evident. Some cultural and attitudinal barriers to integrating PPI across the whole research process were identified. Discussion Despite clear guidelines and established service user involvement, challenges still exist in the integration of PPI in mental health and learning disability research in the UK. Implications for practice Guidelines on PPI may not be enough to prompt changes in research practice. Leaders and researchers need to support attitudinal and cultural changes where required, to ensure the full potential of PPI in mental health and learning disability services research is realized. Relevance statement Findings suggest that despite clear guidelines and a history of service user involvement, there are still challenges to the integration of PPI in mental health and learning disability research in the UK. For countries where PPI guidelines are being developed, attention needs to be paid to cultural factors in the research community to win "hearts and minds" and support the effective integration of PPI across the whole research process.