NCT04999865

Cystic Fibrosis Reproductive and Sexual Health Collaborative: Building Online Research Partnerships

Building Online Research Partnerships to Improve Sexual and Reproductive Health for Women With Cystic Fibrosis (CF)

• Status: Unknown
• Phase: —
• Study type: Observational
• Enrollment: 100 (estimated)
• Sponsor: University of Washington · Academic / Other
• Sex: —
• Age: —
• Healthy volunteers: —

Summary

This is a Patient-Centered Outcomes Research Institute engagement effort aimed at training researchers/providers and patients to work in research teams together online throughout the research process (including: development, design, and dissemination) to address critical gaps in their care. This is a change from the typical research done with people with CF as they are frequently isolated from other members of the CF community because of infection control guidelines that restrict in-person contact to avoid the spread of bacteria between patients. This project has four aims: 1. build capacity for PCOR knowledge and skills applicable for longitudinal online engagement, 2. create and disseminate a best practices PCOR user guide for populations that solely engage online, 3. to create an interactive web-based version of our User Guide through a survey and three modified Delphi rounds, and 4. to create a comprehensive training manual for conducting PCOR online (step-by-step instructions), which will incorporate the aforementioned user guide.

Detailed description

The CF Reproductive and Sexual Health Collaborative (CFReSHC) will introduce and support patient-centered outcomes research (PCOR) to the greater CF community using existing PCOR training products and adapt them so that they address key issues related to researcher-patient teams that solely engage online. We 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. This project has four aims: 1. build capacity for PCOR knowledge and skills applicable for longitudinal online engagement, 2. create and disseminate a best practices PCOR user guide for populations that solely engage online, 3. to create an interactive web-based version of our User Guide through a survey and three modified Delphi rounds, and 4. to create a comprehensive training manual for conducting PCOR online (step-by-step instructions), which will incorporate the aforementioned user guide.

Conditions

• Cystic Fibrosis
• Patient Engagement

Interventions

Type	Name	Description
OTHER	4-part educational program to build patient-engagement methodology capacity	We created four online training sessions. Our first training for patients/caregivers only (Research 101) was an exception, however, in which we produced a 25-minute asynchronous, self-directed learning seminar intended to be viewed before the subsequent interactive PCOR sessions. Of the three following synchronous interactive training sessions, two included both learner working groups (patients/caregivers and researchers/providers) together (PCOR 101 and PCOR Team Dynamics) and one session (PCOR Study Design) was for researchers/healthcare providers only.

Timeline

• Start date: 2019-04-19
• Primary completion: 2020-08-15
• Completion: 2021-12-31
• First posted: 2021-08-11
• Last updated: 2021-08-19

Locations

1 site across 1 country: United States