PPI Panels: Briefing Notes for Researchers
Introduction: why have these guidance notes been produced?
It is becoming increasingly important for researchers to demonstrate to funders that they have involved relevant patients and the public prior to submitting their grant application, and that they will continue to involve the public in the research should funding be awarded. Reflecting this requirement, a number of university departments and NHS trusts in the Yorkshire and the Humber region have set up their own PPI panels. These panels exist to provide PPI-related advice to researchers who are developing research ideas and grant applications, and to provide PPI advice to ongoing studies.
PPI panels provide an opportunity for researchers to receive feedback from a patient and public perspective on the following issues prior to the submission of their bid:
- whether the proposed idea is seen as worthwhile to patients and the public
- whether the proposed study design is appropriate (for example, in the case of RCTs, patients and the public may have views on the content of the trial’s control arm)
- the appropriateness of proposed data collection methods for specific population groups
- the choice of outcomes and outcome measures
- the timing and location of proposed data collection points
- the degree of burden the researchers propose to place on potential participants at each data collection point
- proposed consenting procedures
- the lay summary of the application
- the proposed level of PPI in the research study if it were to be funded.
Once an application has been funded, researchers may wish to receive further advice and support from the PPI panel. During the conduct stages of research, PPI panels can advise researchers on:
- the content and wording of data collection instruments (for example questionnaires and interview schedules)
- the wording of the lay summary of the application to the Research Ethics Committee, including the patient information sheet and any other related material
- ideas for boosting accrual into the study, if the study runs into recruitment difficulties
- interpreting the data collected during the study
- the best ways of disseminating the findings of the study to relevant patients, service users and lay people.
Every PPI panel is different in some way and the RDS YH does not wish to prescribe how individual panels should be set up and run. The following briefing notes are intended to provide guidance on the issues that researchers should think about when setting up their own panel.
Special thanks to Hannah Hollinger, facilitator of the Sheffield Motor Neurone Disorders Research Advisory Group, for making available documentation produced by this PPI panel, which has been used to illustrate key points within these guidance notes.