Community Partnership for Ethical Research

Betsy Ripley, MD, MSVirginia 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 ResearchFigure 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 MedicineResearch

RAMPART

CARs TSARsIRB RAMPART ParticipantsRichmond Community

Community PartnershipFor 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