Abstract
BackgroundPatient-centered outcomes research (PCOR) emphasizes patient-generated research priorities and outcomes, and engages patients throughout every stage of the research process. In the cystic fibrosis (CF) community, patients frequently provide input into research studies, but rarely are integrated onto research teams. Therefore, we developed and evaluated a virtual pilot PCOR training program to build PCOR capacity in the CF community (patients, caregivers, researchers, nonprofit stakeholders and providers). We aimed to show changes among participants’ perceived PCOR knowledge (a.k.a PCOR knowledge), confidence in engaging stakeholders, and post-training session satisfaction.MethodsGuided by a prior CF community educational needs assessment, our researcher and patient-partner team co-developed a four-part virtual online training program. We structured the program towards two learner groups: patients/caregivers and researchers/providers. We evaluated participants’ PCOR knowledge, confidence in engaging stakeholders, and session satisfaction by administering 5-point Likert participant surveys. We tested for significant differences between median ratings pre- and post-training.ResultsA total of 28 patients/caregivers, and 31 researchers/providers participated. For both learner groups, we found the training resulted in significantly higher PCOR knowledge scores regarding “levels of engagement” (p = .008). For the patient/caregiver group, training significantly increased their PCOR knowledge about the barriers/enablers to doing PCOR (p = .017), effective PCOR team elements (p = .039), active participation (p = .012), and identifying solutions for successful PCOR teams (p = .021). For the researcher/healthcare provider group, training significantly increased participants’ ability to describe PCOR core principles (p = .016), identify patient-partners (p = .039), formulate research from patient-driven priorities (p = .039), and describe engagement in research grants (p = .006). No learner group had significant changes in their confidence score. Most participants were either “satisfied” or “very satisfied” with the training program.ConclusionsOverall, our virtual pilot PCOR training program was well received by patients, caregivers, researchers and providers in the CF community. Participants significantly improved their perceived knowledge with core PCOR learning items.Trial registration Retrospectively registered at clinicaltrials.gov (NCT04999865).
Highlights
Patient-centered outcomes research (PCOR) emphasizes patient-generated research priorities and outcomes, and engages patients throughout every stage of the research process
We found in a prior survey that 85% of patients, caregivers, healthcare providers and researchers in the cystic fibrosis (CF) community wanted training on how to include patient partners onto research teams
This study aims to evaluate a virtual training adapted for the CF community on perceived PCOR knowledge acquisition, confidence in engaging stakeholders and satisfaction of the training program
Summary
Patient-centered outcomes research (PCOR) emphasizes patient-generated research priorities and outcomes, and engages patients throughout every stage of the research process. The CF community is widely recognized for its long-standing tradition of including PwCF and families to help shape research affecting their community [2, 3] This patient participation has been limited to only discrete parts of the research process, such as participating on data safety monitoring boards, prioritizing research topic areas, providing feedback on study questionnaires or reviewing grant proposals. Part of what makes bringing PwCF together onto research teams so difficult are strict infection control guidelines that restrict in-person contact between patients to avoid the spread of deadly pathogens [5] This is especially problematic for traditional methods of patient engagement, which are mostly geared for “in-person” group interactions
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