Patient vs. Community Engagement: Emerging Issues

Abstract

Background: The value proposition of including patients at each step of the research process is that patient perspectives and preferences can have a positive impact on both the science and the outcomes of comparative effectiveness research. How to accomplish engagement and the extent to which approaches to community engagement inform strategies for effective patient engagement need to be examined to address conducting and accelerating comparative effectiveness research.

Objectives: To examine how various perspectives and diverse training lead investigators and patients to conflicting positions on how best to advance patient engagement.

Research design: Qualitative methods were used to collect perspectives and models of engagement from a diverse group of patients, researchers and clinicians. The project culminated with a workshop involving these stakeholders. The workshop used a novel approach, combining World Café and Future Search techniques, to compare and contrast aspects of patient engagement and community engagement.

Subjects: Participants included patients, researchers, and clinicians.

Measures: Group and workshop discussions provided the consensus on topics related to patient and community engagement.

Results: Participants developed and refined a framework that compares and contrasts features associated with patient and community engagement.

Conclusions: Although patient and community engagement may share a similar approach to engagement based on trust and mutual benefit, there may be distinctive aspects that require a unique lexicon, strategies, tactics, and activities.