BPSU - Patient and public involvement (PPI) guidance for researchers

The British Paediatric Surveillance Unit (BPSU) has produced a guidance document for researchers on how to involve patients and the public in their research. PPI is especially important in research which does not involve individual consent, as carried out by researchers undertaking studies through the BPSU, to ensure openness, transparency and accountability to the public.

This document is designed as an accessible and practical guide for researchers carrying out research through the BPSU, but we also hope it will be useful to a wider audience who are grappling with public and patient involvement in similar surveillance studies. It offers practical advice on how to involve people, and provides examples of where PPI has been effective in BPSU studies.

The guidance was developed by TwoCan Associates in collaboration with a steering group of BPSU Scientific Committee members including its lay representatives. It was developed after extensive review of existing PPI practices within the BPSU and interviews with researchers, patient representatives and BPSU committee members. The results of those reviews are also available to download below..

PPI guidance for researchers (PDF, 50 pages, 1MB)

A review of patient and public involvement at the BPSU: Part 1 – Documentary Evidence (PDF, 21 pages, 352KB)

A review of patient and public involvement at the BPSU: Part 2 - Qualitative Research: Interviews with BPSU Stakeholders (PDF, 49 pages, 340KB)