COPD is an umbrella term used to describe progressive lung disease, such as emphysema, chronic bronchitis, refractory (non-reversible) asthma, and some forms of bronchiectasis. It affects 15-30M Americans and is a major cause of health disparities. COPD disproportionately affects women, elderly, and individuals without a high-school diploma, unable to work or unemployed, or living in households with income less than $25K a year. COPD patients with frequent exacerbations experience greater decline in health status and guidelines on how to provide the best care during and following hospitalization are lacking input from end users and are rarely followed when evidence does exist. COPD patients are faced with two challenges, areas where there is little evidence of what works best AND a lack of implementation of what we do know works. To progress in improving health and outcomes for COPD patients, now is the time to create a framework, informed by end users, to guide more effective dissemination and implementation and direct future PCOR to address the most important evidence gaps.
CONNECT will result in a written report and visual framework that depicts the most important existing evidence for immediate dissemination efforts, the gaps in evidence that need to be addressed in future PCOR studies and a framework for how PCOR can be disseminated in the COPD community, including a test case that uses the framework. This report and visual will be widely disseminated through COPDF and stakeholder channels, updated regularly and used as part of regular COPD research updates issued by the COPDF moving forward.
Objectives: 1. Execution of 2 digital surveys (patients/caregivers and clinicians) to prioritize outcomes 2. In-person engagement with stakeholders to build out outcomes prioritization and inform the dissemination framework components 3. Development of a dissemination framework that guides the selection, framing and dissemination of relevant COPD PCOR research 4. A test case of the new dissemination framework using new COPD PCOR research results 5. A final report detailing the results of the survey, engagement activities and test case 6. A visual depiction of the dissemination framework and 7. Dissemination of the framework and visual.
COPDF will convene a multi-stakeholder Study Advisory Board (SAB) to provide input throughout the project including on the outcomes prioritization and engagement efforts, in the selection of the test case and in the drafting and refinement of the framework itself.
CONNECT will identify and rank the health and quality of life outcomes that matter to patients, caregivers and clinicians, and highlight the differences between the groups. The final product and visual, a framework for future dissemination activities, is intended to serve as a guide for future PCOR dissemination efforts and new PCOR CER applications.
CONNECT will be led by key personnel including a patient and caregiver, a clinician, a researcher, a non-physician provider who implements a care transitions programs and a COPDF staff member. This core group will be supported by the SAB, including patients, young clinical investigators, representatives from the PCORI funded studies and other patient advocacy organizations. After extensive input from patients, caregivers and clinicians, the key personnel and SAB will develop the framework visual and report.