The COPD PPRN BRIDGE project
The COPD PPRN BRIDGE project - Bridging the GAP between Patients/Caregivers and COPD Research was awarded by the Patient Centered Outcomes Research Institute (PCORI) through a Eugene Washington Engagement Award in 2019. Beginning in May 2019, the 2 year project focuses on increasing the voice and inclusion of people with COPD and their caregivers in research.
The COPD PPRN BRIDGE project has 3 overall foci that will be addressed simultaneously throughout the 2 year period. BRIDGE has COPD Foundation co-leads – Cara Pasquale, MPH; Barbara P. Yawn MD, MSc; and Mary Ellen Houlihan (Patient Partner).
It is governed by a multi-stakeholder advisory board that includes patient and caregiver partners as well as representatives from advocacy organizations, the pharmaceutical industry and Federal agencies.
The 3 foci that guide the BRIDGE project include:
Focus 1 – led by Richard Mularski, MD MPH - Develop a patient/caregiver prioritized COPD related research agenda:
To date, COPD research decisions and study ideas have included limited input from people with COPD and their caregivers. Through this focus, the COPD PPRN BRIDGE project is designed to include patient’s and caregiver’s voices in developing COPD research agendas. A list of research topics deemed of interest to patients was generated through the analysis of responses to a free-text question in the COPD Patient Powered Research Network (COPD PPRN) "What Research Matters Most To You". This list will be the foundation for a large-scale voting initiative on these topics which will be conducted on the COPD Foundation’s COPD360social online community which currently included over 46,000 users in January 2020.
Focus 2 – led by Cara Pasquale, MPH and Mary Ellen Houlihan - Identify and enlarge number of materials to support COPD patients/caregivers as investigators on research teams:
While inclusion of patients and caregivers in clinical research has been increasing, the role for people with COPD and caregivers on studies is often limited. This focus aims to expand the role of the patient and caregiver from those with limited inclusion to patient investigators or other full scale members of study team. Including people with COPD and caregivers on research teams is critical to ensuring their lived experience is considered when designing, implementing and disseminating research studies. However, these individuals require appropriate education support and training before undertaking this role. The COPD PPRN BRIDGE project team is creating new materials and a training to help prepare and support patients and caregivers to assume these roles.
Focus 3 – led by Barbara P. Yawn, MD, MSc - Develop draft surveys to assess the impact and success of engaging COPD patients and caregivers as research team members
Limited information is available on the impact of patient and caregivers inclusion as a member of a study team. This Impact has been described in vague terms such as "change or improved research questions" or "improved study materials". This BRIDGE focus area will include, identifying work completed thus far in this area. The BRIDGE team will identify strengths, gaps and limitations in currently available data. The information collected from this assessment will lead to the development of recommendations related to the types of questions and surveys that should be asked in order to determine the success of including patients and caregivers as full members of a study team.