Community Partnership for Ethical Research Betsy Ripley, MD, MS Virginia Commonwealth University For Discussion only

Silos Test a hypothesis Boost recruitment Grant compliance Publication Tenure Research relevant to community need Input in research design and implementation Learn outcome of research Respect VCU Community

Models of Community Involvement in Research Figure 1: Traditional Model Figure 2: Proposed Model for Community Participation

Community Engaged Research Model Community-informed research design Increased recruitment resulting from comprehension and trust Research findings disseminated into the community Community feedback in addition to outcome metrics Sustained community/university networks EFIC Research Develop a viable approach to community consultation and public disclosure Develop a plan to evaluate communication diffusion Address health disparities in research Emergency Medicine Research RAMPART CARsTSARsIRBRAMPART ParticipantsRichmond Community Community Partnership For Ethical Research For Discussion only

Community Partnership for Ethical Research Specific Aims Specific Aim 1:To recruit, train, and receive feedback from Community Advocates for Research (CARs) Specific Aim 2:To engage, train, and receive feedback from Temporary Satellite Advocates for Research (TSARs) Specific Aim 3:To evaluate during and after the RAMAPRT study the efficacy of the strategies For Discussion only

Community Advocates for Research (CARs) Who are CARs? CARS are people who are active in their community and know the opinions, lifestyles, strengths, and skills of their community. Some CARs have knowledge about people most affected by seizures. What do CARs do? Meet with the research team Plan activities to build the community network Share information Survey the community Map the community Develop training materials to help community members work as part of a research team For Discussion only

Temporary Satellite Advocates for Research (TSARs) Who are TSARs? Representatives from community agencies that are satellite sites for research Individuals within community agencies that have direct contact with the people an agency serves Satellite Site: Richmond Ambulance Authority (RAA) TSARs: Paramedics and Communication Personnel at RAA What do TSARs do? Complete a post event survey after enrolling each RAMPART participant Participate in an interview regarding thoughts and opinions about emergency research Develop curriculum For Discussion only

RAMPART Participants RAMPART seizure patients Complete a 5 minute interview regarding knowledge of RAMPART study prior to becoming a RAMPART participant and cross streets nearest to residence and seizure event Community Members CARs will be asked to survey a minimum of 30 individuals in their communities at baseline and every 6 months For Discussion only

IRB Members IRB panel members who have reviewed RAMPART and other EFIC trials Interview to determine their attitudes, concerns, and opinions regarding “standard” community consultation and EFIC trials and the impact this proposed model could have on their reviews For Discussion only

Sustainable

Funded by an NIH Challenge Grant For Discussion only