There has been a normalisation of Public Patient Involvement (PPI) in public health research, and a requirement for PPI as a funding condition from some funders, including NIHR. PPI representatives are increasingly involved in funding decisions and co-production including PPI and community involvement has become of increasing importance. However, there remains tension between expectations of how PPI will work and its implementation and impact in public health policy-facing research, particularly given its origins in clinical research. Particular concerns focus around PPI in PH policy research given the nature of the populations and health “conditions”, who is “the public” in question, and how PPI applies to research on broader structural drivers of inequalities. There are difficulties in valuing and evaluating PPI; and sometimes over-optimistic expectations about policy ‘impact’ and how this can be demonstrated. There is a need to understand more about these issues to inform current PPI practice in PH Policy research, and to increase PPI acceptability and therefore implementation of desired policy aims and objective around PPI.
There are useful and detailed frameworks for guidance for using PPI by government and funding bodies such as the NIHR. But implementation remains problematic and a hindrance to achieving best outcomes. The question is: since guidelines exist why is PPI sometimes not well accepted and implemented and what can be done to resolve this? Going forward it is important that, rather than viewing PPI participants as a challenge, to see them as a pathway to better outcomes adding value by including their viewpoints especially around implementation problems. Resolution of these questions will help efficient, well implemented and impactful policy, and better implementation of PPI in policy-relevant research.
In addition, there appears to be uncertainty around what work is being done on PPI and by which organizations and for whom it is most beneficial. Mapping of current and future work would be beneficial to decision-making and to ensure no doubling up of efforts and to target PPI improvement where it is most needed.
Policy Research Units (PRU) provide an important setting for this
research given that some have a PH focus or theme (PH, Behaviour
Science, PIRU and others) and also include research with a
methodological focus (such as EEPRU with focus on PH economics) which is
often a particular challenge for PPI. They will therefore provide an
important insight into the benefits of PPI in public health policy
research, which type of units or areas benefit most from its inclusion
and the challenges and facilitators of implementing PPI in policy
research units.
Understand reasons for lack of acceptance and implementation of PPI in PH PRUs and develop guidelines for its improvement.
1 and 2 will lead into: Interviews (approx 20) with representatives in PRUs including PIs, researchers and (where relevant project management/administration staff; members of funding panels who fund PH research; PPI representatives; and NIHR.