Background: PCOR techniques to engage patients are usually designed for in-person, group interactions. The Cystic Fibrosis Reproductive and Sexual Health Collaborative (CFReSHC; www.cfreshc.org) solely engages virtually due to patients’ risk of cross-infection. CFReSHC works with its stakeholders to improve sexual and reproductive (SRH) resources for women with cystic fibrosis (CF), a rare genetic disorder. COVID-19 presents a critical opportunity to determine if and how CFReSHC’s existing virtual patient engagement model can be adapted and improved for other patient groups.
Proposed Solution to the Problem: The project team will share CFReSHC’s virtual model for patient-driven research generation with the breast cancer (BC) community to examine its utility and adapt its tools to benefit the sexual reproductive health of women with breast cancer. Since SRH is multilayered, the team will create a patient-driven PCOR Lab for establishing Transdisciplinary Team Research (LeTTR) in which stakeholders will convert patient-driven research questions into viable CER/PCOR studies. The project, housed at the University of Illinois-Chicago, will function virtually to maximize participation.
Aim 1: Determine the feasibility of using CFReSHC’s virtual patient engagement model; make adaptations to optimize BC community engagement.
Aim 2: Empower women with CF/BC to generate research questions on SRH topics.
Aim 3: Establish a lab to translate patient-generated research questions into BC/CF studies designed and executed by transdisciplinary PCOR research teams to pursue after the project period.
Aim 4: Ensure that future research aligns with PCOR principles and patients’ experiences and priorities.
Aims 1 and 2: The project team will establish a Breast Cancer Cohort Team (BCCT) that will pilot CFReSHC tools and protocols to generate research questions about pressing women’s health concerns. The BCCT will adapt the model to fit its community’s particular needs.
Aims 3 and 4: The team will establish a transdisciplinary PCOR lab as a pathway to PCOR/CER research on CF and/or BC-SRH issues. LeTTR will expand PCORI’s stakeholder audience to include clinical and nonclinical researchers.
Projected Outcomes and Outputs:
Short term: A report entitled “Generating Patient-Driven Research Questions for Women’s Health: Virtual Engagement Report for Women’s Health with Chronic and Serious Diseases,” which will detail the piloting process, and the necessary adaptations needed for other patient communities to optimize virtual engagement.
Long term: LeTTR will sustain research collaborations between patient partners and researchers. The lab’s charter will provide team guidelines, goals and functions, and expected outcomes. After assembling up to four teams to study BC/CF women’s health issues, the team expects each to start to design a study that responds to the priorities expressed by patient partners.
Patient and Stakeholder Engagement Plan: The project’s stakeholders are adult women with BC and CF, researchers from multiple disciplines who work on BC-SRH and CF-SRH issues, and clinicians. The team will use PCOR principles to engage stakeholders meaningfully, as per the project’s detailed plan.
Project Collaborators: The team’s collaborator, the Patient Advocate Foundation (PAF), is a non-disease-specific organization helping about 3,600 BC patients through its case management program yearly. PAF has a strong connection to, and understanding of, the project’s target patient partners and it will bring a diverse cohort of BC patients/survivors who have been served by PAF’s direct patient services.