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.

 

[rvallee]

collaboration investigating how thoughts and feelings, personal relationships and lifestyle can affect chronic pain

Network for Chronic Pain Research

Those two concepts are very different from one another. If there is a problem with "how thoughts and feelings, personal relationships and lifestyle can affect chronic pain" in research, it's that there is far too much obsession over it, and not enough serious efforts going to actually solve this problem.

This is just propaganda. It has zero chance of producing anything useful because it completely misses the point about the problem, and how public involvement would influence this kind of research, for which a first priority would be to cease and desist and any all research wasted on nonsense like this. Anyone seriously critical about research would not approve of this approach, because it's completely performative.

So it's basically like an old crusty aristocracy experimenting with this whole "democracy" thing by involving a fake legislature with no actual powers, a purely symbolic institution that serves simply to provide fake legitimacy. It would be hard to miss the point harder, and it really stretches disbelief that this is a serious research effort, rather than a marketing campaign to whitewash the same old nonsense by labelling it with a "public involvement" sticker.

 

[EndME]

Lessons Learned?

 

[BrightCandle]

My primary experience with the PPI's I have been involved in is we didn't get to do anything important, they kept us largely out of the way. We got to choose between logos but not the actual text of the way the study was presented, we couldn't comment on the method of the study or the questions or measurements. It led to the ridiculous situation in one study where they were presenting the results to us and all of us found them pointless because we are house and bedbound, we don't go to our GPs offices or the pharmacy.

I see no good way to measure qualitatively contribution to PPIs because the researchers are the ones talking about how useful they are. Some of the people involved don't know how to design a study and see the flaws, but those that do are managed to ensure they can't comment on the flaws they can see. I just don't see how you even research this in any practical way I found most people seemed happy with what they were asked even though it was clear to me we were intentionally kept away from the things that mattered.

 

[Arnie Pye]

I haven't bothered to keep up with research on chronic pain ever since the NICE NG193 Guidance was published, on the basis that if NICE could publish that [garbage] there was no chance that anyone would ever take me seriously, even though I know the causes of my chronic pain and there is evidence of the causes in my medical records to prove it. I would definitely never volunteer to become a research subject for someone to investigate my "thoughts and feelings, personal relationships and lifestyle".