Background: Patients lack a voice in prioritizing what matters most to them in the surgical treatment of stress urinary incontinence (SUI). SUI affects 38 percent of women and costs $12 billion annually in the United States. Treatments range from nonsurgical choices to surgery, with hundreds of thousands of women undergoing surgery each year. Success in SUI surgery has historically been defined by clinicians. Complications and debilitating consequences are documented but not fully elucidated, making it challenging for patients to be fully informed in their treatment decisions. This has limited researchers’ understanding of the relative efficacy of treatments on patient-centered outcomes, how patients perceive quality of care, and how to improve care to meet patient priorities.
Proposed Solution to the Problem: The project team’s solution aims to engage and amplify patient voices. The team proposes to develop a strategic plan to study the surgical management of SUI by establishing a national patient network, training patient partners to build research capacity, and engaging patients in identifying and prioritizing patient-centered research questions.
Objectives: The objectives of the project are to: establish the SUI Patient Network to develop patient partners, and the SUI Multi-Stakeholder Research Collective; generate research questions and convene multi-stakeholder research engagement events; and prioritize research questions.
- The team will recruit the patient network, provide research training, and empower patient partners to participate in the research collective.
- The team will develop SUI research questions driven by patients, including conducting research prioritization surveys, holding interactive webinars and focus groups, and convening research collective meetings to discuss questions important to the SUI disease states.
- The research collective will then consolidate and prioritize research topics to produce a consensus list of critical CER questions in SUI. Results will be distributed to patients, research communities, and advocacy organizations.
Projected Outcomes and Outputs: The project team will establish a national network of SUI patient partners and produce a list of prioritized research questions that are meaningful to SUI patients. These will serve as important resources in linking SUI researchers with patient partners when designing future PCOR/CER studies and competing for future PCOR funding. Outputs include: training curriculum in SUI-focused PCOR/CER, patient-centered research priority report, and standard operating procedures for engagement activities.
Patient and Stakeholder Engagement Plan: Women who are considering or have had SUI surgery represent the key stakeholders. Principles of engagement will be emphasized including reciprocal relationships, co-learning, partnership, trust, transparency, and honesty. Patients will be actively engaged in project activities throughout the project’s timeline through surveys, interactive webinars and focus groups, and research collective meetings. Patient partners will be involved in synthesizing feedback and results to inform next steps for collaborative SUI-focused PCOR.
Project Collaborators: This work is led by Virginia Mason Medical Center and will be carried out in partnership with Kaiser Permanente Northern California and the University of Washington. The team will also partner with the National Association for Continence (NAFC).