The Embedded Research Project has been going for a while now and the case studies have been identified and data collection is in full swing. Over at the Patient and Public Involvement (PPI) desk my colleagues and I have been grappling with the Patient and Public Involvement (PPI) issue, which in reality does not appear to be a day to day issue for the vast majority of those researchers working in, on, or around embedded projects.
Indeed, I would say that my thoughts so far on PPI and Embedded Research is that it is either a non-issue or one that is not very high up on the ‘to do’ list. I am really hoping that this is not actually the case and maybe in the coming months exemplary examples of PPI will come flooding into Embedded Research Project Central.
However, on the basis that I am probably wishfully thinking, I just want to spend bit of time expanding on what I think might be a central fault line running through the Embedded Research phenomena vis a vis PPI. I think that the problem stems from PPI being approached in the NHS from to different directions. Not necessarily opposite directions but having different beginnings and different trajectories. On one hand there is the research approach to PPI, on the other there is the service improvement approach.
There are overlaps but also fundamental differences. For the research PPI then, the clue is the way that research funding is distributed in the NHS, ie the National Institute of Health Research (NIHR) with an emphasis on the ‘national’. In the last seven or eight years, and especially since the NIHR set up Involve, you can’t get a medical research grant in the NHS without having a meaningful input from PPI representatives.
And to a great extent the input does have an important part to play in decision making.
The whole process of recruitment of PPI representatives, through training, paying for time and expenses and the actual participation, has actually given influence and power to NHS patients and the public.
OK it is far from perfect in many areas especially around representation and we the Embedded Project PPI group will be critiquing the whole process as part of our final Project report. But the general principles are part of the NIHR culture, and those principals are replicated across most if not all of the medical research funders in the UK. Third Sector funders of medical research would argue that they have always been ahead of the curve in this respect, but the reality is that PPI for the majority of medical research funders in the UK operates a PPI process that is similar to the NIHR mode. Now I am the first to admit that most of my PPI experience comes from the research side and I have limited experience of service delivery. So it might be at this point that my hypothesis, outlined above, comes crashing down around my ears, but never the less I will outline my case on the basis that I will swiftly put right by those who really know.
I would say that PPI in service improvement is a local/regional affair or is based on specific medical conditions for example strokes. As such there is no overall national approach to this issue in terms of formal processes. Further, unlike the approach of research PPI it seems to be more of a consultation process rather than a strong emphasis on involvement. What I mean by that is that patients are asked their views and about their experiences and those views are taken forward into a decision making process which would include medical professionals, policy makers and resources holders who are making difficult decision about the best/better use of scare resources in a scenario of fewer resources and increasing demands.
Service improvement is therefore a more straightforward PPI process and is unencumbered the issues of PPI in research, such as equipoise, consent, objectively, recruitment, patient benefit value for money etc, all of which a PPI representative HAS to understand and discuss with medical professionals usually in a committee setting. In short research PPI representatives are in the decision-making process and can and do make strong representations at the heart of decision making.
As we know Embedded Research Projects are a relatively new innovation and how Embedded Research is defined is proving to be a complex undertaking if for no other reason than there is no one model. But as the work of the project is finding out they do share a number of key characteristic (new readers can explore this website to get up to speed with this work). It would seem to me that PPI sits more towards the service improvement type of PPI than the research model of PPI in so far as it is a more narrow but deeper consultation type, rather than a broader more influential model.
As I write, the data collected from the case studies may show that PPI in any form is weak, and there is a long way to go to get PPI embedded in Embedded Research Project that makes it a meaningful process that has advantages for all those involved. We will see.