Background: Patient and public involvement and engagement (PPIE) is an expectation when conducting research, including Health Technology Assessments (HTA), and is increasingly expected as a key component of evidence syntheses. When determining outcome measures for a proposed HTA evaluating nonsurgical interventions for treating pelvic organ prolapse (POP) in women, we wanted to ensure our research was of most relevance to women with the condition. Here, we describe the methods we used to collaborate with women with POP.
Objectives: To describe the PPIE methods that informed the scope of our evidence synthesis HTA proposal.
Methods: In November 2021, we held a workshop with women with POP to discuss our research question, its relevance to women with the condition, and what interventions and outcome measures they would like to see included in our evidence synthesis. Following this, we designed a survey using Qualtrics, which was distributed via PPIE networks and patient groups in the UK in May 2022. From this, we derived an initial ranking of outcomes and time-points. We brought these results to an online workshop with women with POP hosted on Zoom in December 2022. Here, we gave a background to the proposed project and used Mentimeter to derive a final ranking of outcome measures and follow-up times of most importance to attendees.
Results: Following our process, four outcome measures of most relevance to women with POP were chosen for the proposed project. Long-term follow-up (at 12 months or more) was identified as the most important time-point at which to assess change in these outcomes. Our discussions within the workshops also identified other areas through which the proposed project could be made more relevant to women with POP.
Conclusions: The involvement of women with POP in our proposal has greatly enhanced the relevancy of our research to patients and the public. People undertaking Cochrane reviews may wish to consider adopting or adapting this approach to help ensure their research is of most relevance to their population of interest. Patient, public, and/or healthcare consumer involvement: PPIE was conducted throughout our work.