Background: Within the Chronic Obstructive Pulmonary Disease (COPD) community, the COPD Patient- Powered Research Network (PPRN) found: limited voice of patients/caregivers in COPD research agendas; incomplete cataloguing of educational opportunities to help patients and caregivers engage in research; and a lack of tools to assess the impact of including patients and caregivers in research.
Proposed Solution to the Problem: The BRIDGE project will: develop a patient-driven, prioritized COPD research agenda; catalogue and expand materials to prepare patients/caregivers to engage in the research enterprise; and develop metrics to assess the impact of patients and caregivers in research.
Develop, prioritize, and nationally disseminate a patient/caregiver-driven COPD research agenda
Catalogue existing patient/caregiver research education materials and expand, tailor, and test new resources
Continue the early work that has begun to identify domains and questions assessing the impact of including patients/caregivers in research
Activities: The project will:
Expand existing COPD research agendas using patient input from COPD PPRN and COPD360social data (patients/caregivers will be asked to rank research topics and corroborate rankings during in-person meeting)
Collate existing resources to prepare patients to engage in research, identifying and filling gaps, and asking patients to test materials
Summarize existing literature as a basis to develop domains and draft questions to measure the impact of patient engagement in research
Outcomes: Outcomes for the BRIDGE project will include:
Patient/caregiver prioritization in COPD research agenda to guide future work
Summary of existing patient/caregiver education to engage in research, including materials to fill educational gaps for an older and functionally limited community
Summary of work quantifying levels of patient engagement in research
Summary of work assessing impact of including patients/stakeholders in research, and the list of domains and questions to assess impact of patient engagement in research
Patient and Stakeholder Engagement: Patients, caregivers, and advocates are included on the Stakeholder Advisory Board to review and comment on materials. COPD Foundation’s COPD PPRN and COPD360social participants will vote to prioritize research topics proposed by the COPD PPRN members. Patients/caregivers from PPRNs and PCORnet Clinical Research Networks will be invited to test educational materials and provide feedback. Patients/caregivers are the majority of attendees at the in-person meeting and will play a leading role in dissemination.
Project Collaborators: Kaiser Foundation Research Institute will be a prime collaborator, providing support in the project team’s qualitative work. Several current and former members of the PCORnet community will work with the team on each of the foci to help bridge this work across the PCORI community.
The enhancement to this project will leverage the existing infrastructure of the chronic obstructive pulmonary disease (COPD) Patient-Powered Research Network and COPD360 social online community to develop a prioritized research agenda focusing on mental health and well-being for individuals with, or COPD, during the COVID-19, SARS-CoV-2 pandemic.
The project team will also solicit patients’ preferences for resources and programs to address the mental health impact of COVID-19 prevention strategies.