Patients as Partners in Perinatal Health Research: A Scoping Review.

BACKGROUND

Methods for effective patient engagement (PE) are continually emerging. Previous studies examining barriers, challenges and knowledge gaps for PE in research are not specific to women/individuals with lived experiences of pregnancy or those trying to conceive.

OBJECTIVE

To identify and describe methods used to engage patient partners in perinatal health research.

SEARCH STRATEGY: Ovid, Web of Science, CINAHL and grey literature were searched by a medical librarian from inception to October 2025.

SELECTION CRITERIA: Included studies described the process of PE in perinatal health research. Patient partners were considered as individuals with lived experience of having conceived, been pregnant and/or given birth to a child.

DATA COLLECTION AND ANALYSIS: Of the 331 full-text articles reviewed, 164 articles were included, with most studies (129/164; 78.7%) conducted in the past 5 years.

MAIN

RESULTS

Two-thirds of studies reported compensation for patient partner engagement (n = 111). The most commonly reported barriers to PE included language limitations, recruitment of diverse populations and lack of access to technology or barriers to using technology. Loss-to-follow-up was the greatest limitation to effective patient partner engagement once recruited. Facilitators to PE included the provision of multiple mediums for engagement (e.g., virtual and in-person), avoiding scientific jargon and training research teams in PE strategies.

CONCLUSION

This review highlights the need for greater awareness of PE reporting in perinatal health research. Further research is needed to assess approaches for measuring PE to accurately measure and evaluate its impact on study design, execution and findings.