Strengthening rheumatology research through meaningful engagement of people with lived experience.

Abstract

Engaging people with lived experience in research improves research quality, relevance, and translation. Yet, people with lived experience are infrequently engaged in rheumatology research even though they can make important contributions to research planning, implementation, interpretation, and dissemination. Engagement levels might include consulting (by providing perspectives on a single topic or problem), advising (via two-way interactions with researchers to make recommendations on one or more aspects of a study), or partnering (by engaging with researchers to make decisions together). Evidence on strategies for engaging people with lived experience, including the research stages during which engagement might be most meaningful, levels of engagement, and how to align specific purposes and activities, is limited. We review principles (defined roles and responsibilities, alignment of engagement purpose and activities, collaborative relationships between researchers and people with lived experience, and recognition of the contributions of people with lived experience) and considerations for specific approaches to engagement to guide researchers on how to meaningfully and effectively engage people with lived experience in rheumatology research.