ENGAGING PATIENT PARTNERS TO IDENTIFY ATRIAL FIBRILLATION RESEARCH PRIORITIES-RESULTS FROM A PATIENT ENGAGEMENT WORKSHOP

Abstract

Atrial fibrillation (A-fib) is a leading cause of stroke. Evidence suggests that appropriate clinical and patient self-management can prevent/reduce strokes. To move the A-fib research agenda forward, engaging patients to inform research priorities within programs of arrhythmia research could impact patient reported outcomes. The Canadian Stroke Prevention Intervention Network facilitated a Patient Engagement Day inviting patients from the community to attend and contribute as patient partners, rather than research participants. This aim was to gain understanding about A-fib outcomes that patients/family considered important and perceived priorities for future A-fib research. Framed by the Strategy for Patient-Oriented Research, a facilitated nominal group decision-making technique was undertaken to elicit patient partner perspectives. Using interactive software, questions were brainstormed and results collated for discussion and debate, leading to prioritization of responses. All participants completed the Public and Patient Engagement Evaluation Tool (PPEET). Findings: Twenty-four participants comprised of 11 (45.8%) patients, seven (29.2%) family members/friends, and six (25%) unidentified, took part. Principal A-fib concerns included: 1) worry about stroke (95%); 2) long-term health effects (58%); and 3) travel (58%). The top three research priorities were: 1) curative focus not medication management (84%); 2) A-fib triggers (53%); and 3) home-based/remote monitoring (53%). PPEETs were completed by 22 patient partners, and found the purpose of the A-Fib day was understood and the day achieved its objectives. Engaging patients as partners to determine new A-fib research priorities/topics is feasible. Conclusions: Prevention of stroke and A-fib are key priorities for patients.