Understanding perspectives and preferences for research engagement among members of a lupus patient stakeholder advisory board

The purpose of this study is to understand stakeholders' perspectives on engagement in lupus research as participants on a lupus patient stakeholder advisory board (SAB). This study assesses SAB engagement activities, stakeholders' perspectives on engagement in lupus research, and describe potential impacts of the SAB on research projects. SAB members will provide input on a variety of lupus research studies designed at UNC. Our aim is to assess SAB participants' perspectives on engagement with lupus research and perceptions (e.g., satisfaction, trust) of their role on the SAB providing input on lupus research, including topics identified as priorities for advancing lupus research and care outcomes. With this research, we aim to increase understanding of approaches and opportunities to effectively engage patient stakeholders in lupus research. This study will also explore stakeholders' perceptions of social support, in particular any sense of community or satisfaction derived from involvement in the lupus SAB.