Grace Cheng Braun
Community Health Advocate
Pamela Stanback Miller
Life-long Supporter for Older Adults and Enthusiast, Helper and Encourager
U. S. Food and Drug Administration, Office of Communications and Project Management
Public Affairs Specialist
Stakeholder Engagement Council
The Stakeholder Engagement Council is comprised of stakeholders who represent patient, family, and various organizational perspectives. Members serve staggered terms to provide continuity over the 5-year study period. The goal of the council is to bring stakeholder insights to network-supported research, to maximize the relevance of this research to stakeholders, and to help disseminate network activities and findings to a range of stakeholder communities. This is achieved through group work and by having individual council members participate in specific network activities such as contributing feedback to the annual call for pilot proposals, reviewing progress of funded research proposals and providing feedback on next steps (e.g., reviewing presentations and suggesting potential collaborators), identifying potential community partners for network investigators, and linking investigators with those partners. Individual council members participate in other activities, including helping to review pilot proposals and helping plan the annual meeting.
Community Engagement in Network-Funded Research Projects
Network-funded pilot studies and Working Groups will each involve at least one patient representative as a consultant or member of an advisory panel, or in some cases as a full-fledged member of the research team. To support this process, the network can help investigators identify stakeholders for their projects and learn to work with them.
We provide training in community partnered research for each network-funded PI including telephone consultation with core leadership to strategize how to work with stakeholders in her or his research and to help identify and connect the project with appropriate community partners. Where appropriate, core leaders connect investigators with community partners in the L.A. CAPRA and PATIENTS programs in greater Los Angeles and/or Baltimore to provide culturally relevant expertise at long distance (by videoconference).
Read our Stakeholder Engagement FAQ.