Development and evaluation of a virtual patient-centered outcomes research training program for the cystic fibrosis community

Research Involvement and Engagement

Georgia Brown¹  Laura Mentch¹  Molly Pam¹  Emily M. Godfrey²  Morhaf Al Achkar²  Erin K. Thayer²  Traci M. Kazmerski³ 

[1] Cystic Fibrosis Reproductive and Sexual Health Collaborative, Seattle, USA;Department of Family Medicine, School of Medicine, University of Washington, Box 354982, 4311 11th Ave NE, 98105, Seattle, WA, USA;Department of Pediatrics, School of Medicine, University of Pittsburgh, Pittsburgh, PA, USA;

关键词: Cystic fibrosis;    Co-development;    Education;    Evaluation;    Patient-centered outcomes research;    Patient involvement;    Patient engagement;    Training;   

DOI  :  10.1186/s40900-021-00328-4

来源: Springer

【 摘 要 】

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).

【 授权许可】

CC BY