Establishing a Public Involvement Network for Chronic Pain Research in the United Kingdom: Lessons Learned, 2025, Grieve, Chew-Graham et al

[Andy]

ABSTRACT

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.

Open access

 

[Utsikt]

From the outset, our approach to public involvement was one of equal collaboration between public contributors and researchers. This form of collaboration can be regarded as ‘co-operation’ [27] where public contributors and researchers work together to decide priorities, but researchers led the process and thus it sat between traditional types of public involvement and co-production.

This makes me wonder how much influence there actually was. The researchers have clearly got a goal, and they’ll recruit and select people that want to work towards that goal.

Within this type of collaboration, a power imbalance may exist between the public and the researchers; in terms of decision making due to the needs of research to be rigorous, drawing on existing research, and plans being viable within the temporal and financial constraints of the project.

So the public aren’t rigorous enough for you? And the researchers have a monopoly on the ability to read, assess and understand existing research?

To aid this equitable collaboration between researchers and public contributors, clearly defined roles were created, with the emphasis on public contributors providing their expertise from living with chronic pain, and researchers providing their expertise in research design and implementation.

And here it is: it’s a charade. No real influence. But now they get to brag about how good they are at PPI, because they said so themselves.