Background: Approximately 30,000 people in the United States have cystic fibrosis (CF), a rare, life-shortening genetic disorder that primarily affects the lungs and pancreas. Although CF was traditionally considered a disease of childhood, life expectancy is now 47 years due to medical advances. For women with CF, reaching adulthood has put sexual and reproductive health (SRH) at the forefront of their lives, but meaningful disease-specific SRH guidance and care for these women is lacking. Women with CF have the capacity and desire to participate in research development, design, and dissemination to address critical gaps in their care, but they are frequently isolated from other members in the CF community because of infection control guidelines that restrict in-person contact to avoid the spread of bacteria between patients.
Proposed Solution to the Problem: To address this problem, the CF Reproductive and Sexual Health Collaborative (CFReSHC) proposes to introduce and support patient-centered outcomes research (PCOR) to the greater CF community. The project team will use existing PCOR training products and adapt them so that they address key issues related to researcher-patient teams that solely engage online. The team will create a best-practices user guide for online engagement by performing key-informant interviews with patient- or community-engaged teams and periodic assessments of day-to-day platform use with CFReSHC members and other PCOR teams.
Objectives: This project will have two aims:
- Build capacity for PCOR knowledge and skills applicable for longitudinal online engagement
- Create and disseminate a best-practices PCOR user guide for populations that solely engage online
- Assess needs with patients and researchers
- Adapt and pilot existing PCOR-related training products to address agreed-upon priorities
- Provide interactive trainings for patients and researchers throughout the CF community
- Solicit perceived advantages and disadvantages of existing online platforms for longitudinal engagement from stakeholders
- Periodically assess the utility of the platforms for day-to-day longitudinal engagement activities
- Disseminate outputs generated from this project throughout the CF and PCOR communities
Outcomes and Outputs:
- PCOR training program geared toward populations who engage online
- Increased number of PCOR-trained CF patients, clinicians, and researchers
- Best-practice user guide (including a review of existing online platforms) for online PCOR engagement
Patient and Stakeholder Engagement Plan: The primary stakeholders are adult women with CF, CF clinicians, and researchers. The project team will engage patients and researchers through two main stakeholder organizations listed below and through outreach efforts of current CFReSHC members in their local CF clinics. CFReSHC’s governance board (GB) of patients and researchers will meet monthly to provide direction on how to engage stakeholders.
Project Collaborators: The primary organizational collaborators are the Cystic Fibrosis Foundation and Cystic Fibrosis Research, Inc. Other local CF clinics and organizations will help the team engage patients, researchers, and clinicians.