Abstract

How to best involve and support various types of knowledge users in research is an identified knowledge gap. We conducted a national evaluation of recurrent miscarriage care supported by a Research Advisory Group (convened in March 2020) comprising a range of knowledge users, including parent advocates and people involved in the management/provision of services. In this paper, we share insights from our evaluation of these involvement efforts. We drew on project records to describe involvement activities and experiences. Advisory Group members participated in an electronic survey to assess their involvement experiences at two time points (February 2021 and May 2022). In May 2022, we hosted a virtual World Café, comprising the Research Team and Advisory Group, to explore what worked well and what could have been improved regarding involvement activities. Members reported a positive and rewarding experience with a visible impact on the research process but highlighted issues with the feasibility and scope of the research protocol and challenges to involvement in aspects reliant on clinical expertise. The relational nature of involvement takes priority over techniques. Realistic study protocols that allow time and space for research with knowledge users, and institutional and financial support to facilitate meaningful involvement, are needed.