Stress urinary incontinence (SUI) affects 38% of women in the US, and women are seeking information to make informed healthcare decisions about SUI treatment. Traditionally SUI research is driven by researchers and clinicians. In this model, patient input is often underrepresented. To increase patient involvement, we designed a multi-step engagement project where women with SUI were integrated as partners in research prioritization. The goals of this project included formation of a stakeholder advisory board, a patient partner network, and generating a list of patient-derived research questions.
Adult women who self-reported SUI symptoms were invited to participate in patient engagement activities in partnership with the National Association for Continence and Black Health Matters. ResearchMatch and social media platforms were utilized. Four phases were implemented: (1) crowdsourcing survey, (2) topic collection, (3) research question generation, and (4) prioritization. Women were trained in SUI research and formed a patient partner network. Patient-derived SUI research questions were ranked to generate a list of high-priority SUI research questions. Data collection was completed through RedCap and virtual focus groups.
777 responses (71% White/19% Black) were collected for the four phases of engagement activities. 100 women underwent training and formed a SUI patient partner network. 249 women participated in the final prioritization survey. The top 10 questions ranked as important to patients are shown in Table 1. Virtual engagement through surveys, advisory boards, and focus groups were feasible for soliciting patient perspectives. Intentional outreach and involving community partners for recruitment was imperative for diverse representation.
Patient engagement plays an important role in SUI research to ensure the findings accurately represent the needs of women with SUI. The process implemented was designed around collecting and prioritizing patient voices and viewpoints. These prioritized research questions can help shape future research and educational initiatives to more effectively address the specific needs and concerns of women with SUI.
Patient-Centered Outcomes Research Institute (PCORI) Award 21347-BRIVM
