Genomes and Genes
Community Partnership for Ethical Research
Principal Investigator: ELIZABETH RIPLEY
Abstract: This application addresses broad Challenge Area (02) Bioethics and Specific Challenge Topic, 02-OD(OSP)- 102: Ethical Issues in Health Disparities and Access to Participation in Research. Virginia Commonwealth University (VCU) in Richmond, Virginia, strives to involve minority, underserved and vulnerable populations in crucial research to understand and improve health disparities. Research participation depends on community trust, which lays the foundation for increased participant recruitment, community contributions to effective study design and strategies, identification of community priorities for future research and effective translation of clinical science into the communities we serve. We have developed a model of multi-layered community participation, which moves away from standard sporadic, often primarily input, strategies and builds sustainable research relationships with the community. We will test our model using Community Based Participatory Research (CBPR) methodology to construct and evaluate an effective community consultation and public disclosure approach in an Exemption From Informed Consent (EFIC) research project conducted in mostly minority, underserved, and vulnerable populations. We hypothesize that a flexible, effective, EFIC community consultation and public disclosure model is built on: 1) strategic, engaged, continuing participation from target population representatives and on site research collaborators in the community and 2) ongoing evaluation of communication efficacy. The following Specific Aims will test our hypothesis: o Specific Aim 1: To recruit, train and receive feedback from Community Advocates for Research (CARs) from RAMPART target population representatives to act as sources of bi-directional information and contact between their respective communities and the investigator team/IRB. o Specific Aim 2: To engage, train, and receive feedback from Temporary Satellite Advocates for Research (TSARs), in this case, paramedics in the Richmond Ambulance Authority, to provide another level of community participation, insight and communication. o Specific Aim 3: To evaluate our community consultation model: i) Community participants (CARs and TSARs) to guide adjustments and updates to the strategies (i.e., outreach, communication and training), roles, and infrastructure. ii) The efficacy of the strategies for information diffusion (utilizing modified Epi mapping), the level of comprehension, and the willingness to participate in RAMPART target populations during and after the RAMPART study. iii) RAMPART study participants, community members, study investigators, and the IRB. 7. PROJECT NARRATIVE This project from Virginia Commonwealth University proposes to address the challenging goal of translating best practices into the community and subsequently improving health outcomes in minority, underserved and vulnerable populations by building research partnerships with these communities. We will work with affected communities to build, monitor, adjust and evaluate a community consultation and public disclosure plan for an emergency medicine research project. We hypothesize that this community based participatory research strategy will result in open communication channels for this project and test a larger, enterprise wide, sustainable, model of community participation in biomedical and social/behavioral research.
Funding Period: ----------------2009 - ---------------2011-
more information: NIH RePORT
- EMS providers and exception from informed consent research: benefits, ethics, and community consultationELIZABETH RIPLEY
Department of Internal Medicine, Division of Nephrology, Virginia Commonwealth University, Richmond, Virginia 23298, USA
Prehosp Emerg Care 16:425-33. 2012....
- Community consultation and public disclosure: preliminary results from a new modelCornelia A Ramsey
Center for Clinical and Translational Research, Virginia Commonwealth University, Richmond, USA
Acad Emerg Med 18:733-40. 2011..In a community survey, the percentage of community members reporting having heard about the EFIC trial more than doubled after employing the new approach. This article discusses initial implementation and results...