Engaging people with lived experience in the grant review process

Abstract

People with lived experience are individuals who have first-hand experience of the medical condition(s) being considered. The value of including the viewpoints of people with lived experience in health policy, health care, and health care and systems research has been recognized at many levels, including by funding agencies. However, there is little guidance or established best practices on how to include non-academic reviewers in the grant review process. Here we describe our approach to the inclusion of people with lived experience in every stage of the grant review process. After a budget was created for a specific call, a steering committee was created. This group included researchers, people with lived experience, and health systems administrators. This group developed and issued the call. After receiving proposals, stage one was scientific review by researchers. Grants were ranked by this score and a short list then reviewed by people with lived experience as stage two. Finally, for stage three, the Steering Committee convened and achieved consensus based on information drawn from stages one and two. Our approach to engage people with lived experience in the grant review process was positively reviewed by everyone involved, as it allowed for patient perspectives to be truly integrated. However, it does lengthen the review process. The proposed model offers further practical insight into including people with lived experience in the review process.