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- Title
Development and evaluation of a virtual patient-centered outcomes research training program for the cystic fibrosis community.
- Authors
Godfrey, Emily M.; Thayer, Erin K.; Mentch, Laura; Kazmerski, Traci M.; Brown, Georgia; Pam, Molly; Al Achkar, Morhaf
- Abstract
Background: Patient-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. Methods: Guided 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. Results: A 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. Conclusions: Overall, 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). Plain English Summary: Cystic fibrosis (CF) is a rare, genetic disease; meaning people are born with the disease and have it throughout their lives. CF is a multi-system disease, primarily affecting the respiratory system. Daily care for people with CF (PwCF) includes taking many medications and breathing treatments. Many PwCF have experienced participating in research as research subjects, but not as partners on research teams participating as experts with the lived experience. Including patient and caregiver partners on research teams is important to improve quality of research. By working alongside each other, patient and/or caregiver partners and researchers build trust. Together, they pursue research questions deemed most important to patients and through this inclusive process, study findings are more rapidly adapted by patients and their communities. We found in a prior survey that 85% of patients, caregivers, healthcare providers and researchers in the CF community wanted training on how to include patient partners onto research teams. Our researcher and patient-partner team co-developed a four-part virtual pilot online training program focused on how to integrate patients/caregivers into research teams. This study aims to show changes in participants' perceived knowledge, confidence in engaging stakeholders and satisfaction after participating in our training program. Participants included patients, caregivers, researchers and health care providers. We found that our training program improved knowledge about patient-engaged principles for all participants. This training program stands ready to serve as a model for further development to help increase capacity around patient and stakeholder engagement on research teams in the CF community.
- Subjects
VIRTUAL communities; PATIENT participation; CYSTIC fibrosis; ONLINE education; MEDICAL personnel; CAREGIVERS
- Publication
Research Involvement & Engagement, 2021, Vol 7, Issue 1, p1
- ISSN
2056-7529
- Publication type
Article
- DOI
10.1186/s40900-021-00328-4