Measuring Community Engagement in Medical Research: Utilizing Measures and Lessons Learned

Abstract Information: We, as the internal and external evaluator for the Amputee Coalition, would like to share our journey towards serving as a conduit for community members to engage with research opportunities in order to empower our community as active participants . The Amputee Coalition is a national non-profit that serves people with limb loss and limb difference, who are typically eligible to be involved in research studies. Their involvement is essential for ensuring research is conducted with them and not for them. However, challenges can exist with setting up a network to communicate opportunities and assess research engagement. Attempting to engage any community in research opportunities can be challenging, with many potential barriers (e.g., creating and maintaining an effective platform, clear communication from and to each party, delineating roles and expectations). The Amputee Coalition has successfully set up a network to communicate research opportunities and assess community engagement. While we serve people with limb loss and limb difference, this session will be applicable to any organization interested in involving their community in research. During this session, we will detail our process for connecting researchers to our community, how we assess effectiveness of the network, and how we can assess research engagement through validated measures such as the Research Engagement Survey Tool (REST), a quantitative measure for partner engagement in research. We will also discuss the attendant limitations of using such a specific measure-as well as their limitations. This session will be applicable to organizations and evaluators who are interested in empowering their community to pursue research opportunities, and measuring the effectiveness of their strategies. We will share what we have learned and where we can continue to grow in these areas. Specifically, attendees will be able to: 1) describe how our research network could be adapted to their organization, 2) recall measures to assess the effectiveness of the research network, and 3) implement assessments to measure research engagement.