(029) Patient and Public Involvement in pharmacoepidemiological research: an environmental scan

Background: Patient and Public Involvement (PPI) in research is recognized as a requirement for improving the relevance, feasibility and interpretation of research projects. Despite this, PPI in pharmacoepidemiology (PE) research is still limited.

Objectives: To provide an overview of PPI processes in PE studies through an environmental scan combining a systematic review of the literature and a survey among French PE teams.

Methods: A systematic review, according to PRISMA-P guidelines, used MEDLINE, EMBASE and Cochrane Library from 01/01/2010 and 06/30/2023 to identify PE studies mentioning PPI. Two independent reviewers screened firstly titles and abstracts related to PE and secondly the full text of selected articles for PPI mention. Data on bibliometric information, study characteristics, PPI process and PPI level were extracted. An additional review was conducted on original PE articles published between 01/01/2019 and 06/30/2023 in the BMJ, and the same selection process was used. Lastly, the quality of the PPI report was assessed independently by two evaluators using the short version of the GRIPP2 guidelines.

In addition, we conducted a cross sectional survey on PPI practices among French PE research teams that had published PE studies from healthcare databases. A member of each team agreeing to participate was interviewed by videoconference by the same investigator using a standardized dedicated questionnaire consisting of 30 questions.

Results: On the 3,615 references identified in the 1st systematic review, 232 were selected on title/abstract but none was selected on full-text. Within the additional review, we identified 996 references after deduplication, 74 of which met the full-text selection criteria and 8 studies were selected for data extraction. In these studies, PPI helped improve the research question and outcomes (n=3), interpreted the results (n=2), and built tools adapted to their audience (n=2).
Among the 13/24 respondents to the survey, 3 reported a prior commitment PPI in at least one of their studies and 12 affirmed the relevance of PPI in PE. Particularly, this relevance was recognized in analyzing, interpreting and disseminating results (n=12). Respondents identified barriers, such as the methodological complexity of PE (n=9) and the difficulties of recruiting relevant patients (n=8). To facilitate PPI, they thought training for patients (n=9) and collaborative interactions with specialist teams (n=5) would be useful.

Conclusions: Our environmental scan highlighted the emergence and relevance of PPI in PE, even if PPI remain rare in PE. Tools are needed to assist interested searchers to promote PPI in PE studies and systematize its evaluation and reporting.