Engaging patient partners to identify research priorities for atrial fibrillation: Results from a patient engagement day

Abstract

Objective

We describe a Patient Engagement Day from the Canadian Stroke Prevention Network (C-SPIN). Patients and family members were engaged as patient partners to generate and prioritize future direction for Atrial Fibrillation (AF) research.

Methods

A facilitated group discussion methodology was used that included a nominal group brainstorming and decision-making technique designed to foster participation and idea generation.

Results

Twenty-four patient partners attended. Priorities related to: 1) need for a curative focus and not new medication (84 %), 2) identification of triggers (53 %), and 3) home-based/remote monitoring (53 %). Use of the Public and Patient Engagement Evaluation Tool (PPEET) found patient partners understood the intent of the day, with its objectives being met. Findings highlighted knowledge gaps by patient partners that were previously thought to be understood.

Conclusion

Patient partners could benefit from more focused education about atrial fibrillation. Notably, the priorities identified by patient partners were new to the research team, reinforcing the importance of engaging with the population who will be impacted by the research.

Innovation

Little research has been undertaken examining patient partner priorities regarding atrial fibrillation research. This work highlights patient partners' interest in providing input and shaping future research endeavors.