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. 2013 Fall;7(3):281-290. doi: 10.1353/cpr.2013.0028

Table 1.

Key Steps in Rural Bidirectional Community-Academic Partnerships

Step Components
Planning, Establishing, Maintaining Partnership Define community, needs and interests and GIS map community assets. Underlying principles include mutual respect of each partner’s strengths and leadership; benefit for each partner; bidirectional interactions, including communication. This process is constantly evolving as new needs and resources are identified. This requires intensive planning, interaction, shared ownership and trust over a sustained time period. Signed memoranda of understanding with roles defined.
Identify community contact (individuals and organizations and select representatives).
Train community partners in research ethics and bioethics, peer review research design, clinical trials, health disparities data use, human subjects’ protection and HIPAA, managing grant funds and submission of progress reports, developing study hypotheses.
Train academics in community engagement, CBPR, literacy appropriate skills, communication of research results to public, and cultural competency.
Develop formal needs assessments and update assets maps: Community and academics review research aims, questions, approve tools and methods of data collection; data collection schedules.
Determine academic knowledge of historical community issues and public views of academics; cultural issues approaches and key sources of trusted health information.
Determine community knowledge of key health issues and health related data.
AHEC provides mechanisms for community partner’s inclusion in university’s research grant internal routing pre award;
AHEC provides mechanism for post award subcontracts for community partner.
End of award; preparation of joint manuscripts; implementation of community interventions; monitoring and evaluation.
This process is time consuming, iterative, and includes monitoring and program evaluation throughout.

Partnered Research: Examples of Studies

Clinical Trial Survey Survey of knowledge, attitudes, barriers to clinical trial participation.
Sociodemographic factors in cancer patient accrual to NCI treatment trials
Survey of healthcare access, insurance, barriers, perceived health status, chronic disease risk factors, and trial barriers.
Focus Group Studies Formative research on awareness of biobanks and interest/barriers to tissue, biospecimen donation in rural communities.
Formative research on issues and barriers to clinical trial participation among caregivers, patients who have participated, and general public.
Pre- and post-evaluation of Mini Med Community Course on bioethics, research ethics, clinical trials, and health disparities.
Randomized clinical trials on use of community health workers as patient navigators for cancer screening for urban and rural African Americans.
Randomized clinical trials on use of telehome care patient monitoring of home health patients who are chronically ill with CHF, COPD, HTN, and DM in 2 rural regions. Partners included two rural home healthcare agencies and AHECs.

Programs and Outreach

Community Education on Clinical Trials, Bioethics, Biospecimen Donation Community Bioethics Mini Medical School Programs are free, 4-week educational programs that have included ethical issues for specific diseases, ethics in research, bioethics, human subject protections, clinical trial participation, and how these are related to health disparities. Additional community education programs have been held on specific cancer sites, cardiovascular disease, asthma, stroke, clinical trials, and tissue donation.
Health Professional Continuing Education Continuing education programs were developed for physicians, nurses, social workers and allied healthcare personnel to increase their knowledge of advances in disease management, ethics in research, description of risks/benefits for patients participating in clinical trials, current clinical trials open for enrollment, and research tested interventions and best practice models of proven public health and clinical interventions.
Policy Research and Advocacy The role of policy and policy research and advocacy has gained attention as an important tool in research translation, guaranteeing access to beneficial interventions (i.e., cancer screening and follow up and others, support for health interventions, prevention and mandated healthcare benefits). Community advocacy was cultivated by training partners in this area. Partners quickly developed expertise and were successful in briefing elected officials on key health needs and advocating for a number of legislative and regulatory initiatives. Selected legislation and regulation examples are Telemedicine Reimbursement Study, Rural Physician Task Force, Mandated Health Benefits, Health Disparities Report Card, Clean Indoor Act, Rural Prostate Cancer Education Demonstration Project, State Income Tax Research Check Off, Maryland Loan Assistance Repayment Program, Breast cancer screening and follow up for low income women. These are only a few of the many successes.

AHEC, area health education center; CBPR, community-based participatory research; CHF, congestive heart failure; COPD, chronic obstructive pulmonary disease; DM, diabetes mellitus; Geographic Information Systems, •••; HIPAA, Health Insurance Portability and Accountability Act; HTN, hypertension; NCI, National Cancer Institute.