Establishing RAPPORT - findings from a realist evaluation of patient and public involvement in NHS research

The problem

Patient and public involvement (PPI) is a growing expectation of all health sectors, but little is known about how this is operationalised in NHS research practice. The RAPPORT study (Research with patient and public involvement: a realist evaluation) aimed to

• Determine the variation in types and extent of PPI in a sample of six clinical areas with a broad range of settings and research methods F Describe key processes and mechanisms of PPI
• Explore perceptions of their experiences with the researchers and members of public
• Assess the mechanisms which contribute to public involvement being routinely incorporated in the research process
• Evaluate the impacts on research processes and outcomes, and
• Identify barriers and enablers to effective public involvement in research. 

The approach

project sampling occurred via the NIHR database. 23 case studies were undertaken, collecting specified data on PPI backed up with 2 or 3 interviews per case study with researchers and lay contributors. The stages of normalisation process theory were used to analyse the level and extent of PPI over the timeline of each project. Data analyses were iterated between three researchers to ensure credibility of data interpretation, working with the wider research team and an advisory group to check interpretation and implications. The research team also monitored and reflected on the impacts and success of their own PPI inputs.

Findings

projects had variable actual PPI input: continuous in-depth input over the whole project was uncommon, with most PPI in research design and dissemination phases. A classification of four models of PPI was developed, with emerging evidence of different impacts according to level of involvement. There was some evidence of PPI being poorly understood and undervalued. Authentic relationships between researchers and members of the public appeared a crucial dimension of the extent to which PPI representatives felt able to make an effective contribution. Clarity about expectations, resources to support input, mutual commitment to maximising the PPI contribution, and developing interpersonal relationships over time all appeared to be key to effective PPI.

Consequences

There is evidence that researchers may need more training and guidance on how to make PPI work within their projects: that more could be done to ensure that researchers account for and evaluate the PPI within their funded projects: and that settings which have an ongoing PPI resource between individual research projects are more likely to use PPI in an effective and sustained way in individual projects - because both the process and the relationships have become normalised into routine practice. The models developed should enable researchers and PPI leads to clarify expectations, and may also assist resource allocation. The important finding about interpersonal relationships will act as a challenge to researchers to consider how they include their PPI colleagues as part of their team.