What’s the point of public involvement in an individual participant data meta-analysis of inter-arm blood pressure difference?
While public involvement in primary research studies is widely accepted, there is a perception that there is little scope for involvement to impact on ‘technical’ research, such as secondary analyses of datasets. The purpose of this project is to challenge that view and assess the impact of public involvement in an individual participant data (IPD) meta-analysis using a large international dataset.
The context for this public involvement evaluation is the Inter-arm blood Pressure difference IPD (INTERPRESS-IPD) Collaboration which investigated difference in blood pressure between arms as a predictor of excess cardiovascular disease and all-cause mortality. Data from 24 cohorts, totalling over 57,000 patient records were analysed, confirming the independent contribution of inter-arm blood pressure difference to an improved prediction model for mortality, and to improved prediction of cardiovascular risk with existing risk prediction tools, namely, QRISK2, Framingham and ASCVD risk scores.We took a collaborative approach to public involvement from study inception. We identified advisors through an initial workshop on meta-analysis and worked with a three person public advisory group. They became an integral part of the research process and were represented at all of the bimonthly project progress meetings.We now aim to evaluate the impact of public involvement on this completed research project, the research team (n=14) and the public advisors themselves (n=3). Data comprises transcribed audio recordings of the research meetings throughout the duration of the INTERPRESS project, reflexive e-mails about the public involvement contributed by researchers and advisors after each meeting and minutes, agendas and published documents. We believe this is one of the first studies to analyse data from research meetings attended by both public advisors and researchers.Data analysis will be conducted using an inductive thematic approach. Preliminary analysis of the first two meeting recordings led to the development of a coding framework for ‘impact’. This framework was refined and applied to the remaining meeting transcriptions. The additional data (from, e-mails, minutes etc.) will be used to verify impact. For example, if impact from public involvement is detected during a research meeting, does this result in a tangible outcome?
We will present results from our completed analysis. Preliminary findings suggest that public involvement contributed both tangible impacts, such as demonstrable changes to the published protocol and quality assessment tool (Quality In Prognostic Studies; QUIPS), and many subtle impacts on both researchers and the research itself. We will co-present this work with a member of our public advisory group.
By evaluating the impact of patient and public involvement within the INTERPRESS-IPD project, we challenge the view that there is little point to public involvement in meta-analysis studies and by doing so hope to influence research practitioners to routinely collaborate with public advisors on secondary data analyses.