Establishing a Public Involvement Network for Chronic Pain Research in the United Kingdom: Lessons Learned

Introduction: The Consortium to Research Individual, Interpersonal and Social Influences in Pain (CRIISP) is a 4-year UK university collaboration investigating how thoughts and feelings, personal relationships and lifestyle can affect chronic pain. Patient and public involvement in research recognises that researchers' conceptions of health and illness can be enriched and sense-checked by those of people experiencing a health condition. Published literature reports a gap in meaningful patient and public involvement in research into chronic pain, for example, during early study design. Input in this formative stage aimed to ensure the research proposed had a patient-centred focus which may benefit study implementation. We describe how the authors sought to address this gap and established a diverse public involvement (PI) network to support the CRIISP research. Methods: Thirty-six adult public contributors were appointed to work alongside the research teams. Lessons learned are presented under the themes: optimising collaborative working, recruitment of public contributors, supporting public involvement throughout CRIISP and the retention of public contributors. Throughout this paper, we refer to the term ‘public involvement’ rather than ‘patient and public involvement’ in accordance with the NIHR definition which incorporates people with a range of experiences. Results: Working in partnership with our public contributors, we have embedded PI throughout a chronic pain research programme using an innovative and collaborative process. Conclusion: This model may inform others to maximise the potential of PI within their research. Patient or Public Contribution: The paper reports the collaboration between public contributors with a lived experience of chronic pain and the Consortium to Research Individual, Interpersonal and Social influences in Pain (CRIISP) researchers, by means of a large public involvement network.