POPS2 Patient and Public Involvement (PII): Avoiding tokenism and gathering meaningful feedback to shape research delivery
Ellen Dyer, Amy Sutton-Cole, Department of Obstetrics and Gynaecology, University of Cambridge
Background
The importance of PPI (public and participant input) is widely recognised and enables participants to shape research. Continuous PPI is often a requirement of funders and ethical bodies. The challenge for study delivery is finding a way to undertake PPI in a meaningful way.
Aim
To collate the views of POPS2 (Pregnancy Outcome Prediction Study 2) participants to identify areas of good practice, and those requiring improvement to enhance the participant experience. POPS2 is a prospective study of nulliparous women with a singleton pregnancy which uses ultrasound scans and biochemistry to determine whether screening and intervention for preeclampsia or fetal growth restriction at term can correctly identify women at increased risk of complications and improve the outcome for mother and infant.
Methods
Feedback from participants was collected by a participant experience survey. The survey was given to 50 consecutive participants following their final study visit in late 2021.
Views on waiting times, environment, ease of access and interactions with sonographers were sought.
Findings
Responses were overwhelmingly complimentary; however, the following learning points were identified:
- Women needed reassurance that reporting of third trimester growth is not indicated in low-risk pregnancies
- Research scans should be co-ordinated with clinical scans
- Communication about upcoming appointments should be improved
Outputs/organisational learning
The findings of the survey were disseminated to study staff. In response to the learning points identified additional staff training, as well as changes to consent messaging and pre-appointment text messages were implemented in 2022. The survey will be repeated in the summer 2022 to monitor the impact of these changes and identify any new issues that may have arisen. By adopting a cyclical approach, it is anticipated the study PPI will remain meaningful for both participants and study team throughout the study and avoid it becoming a tokenistic exercise.