Researchers who work with underserved communities must build research partnerships with communities. Historically, there has been noted tension between how research is conducted and with whom, how those who are subjects of the research fit into the world that researchers create, and how research findings are shared. Best practices point to including underrepresented and underserved populations in research activities through community responsiveness and engagement.
The Community-Campus Partnerships for Health (CCPH) at the University of Washington promotes these research ethics: 1) advancing ethical research that minimizes risks and maximizes benefits for both the individuals and communities involved, and 2) ensuring that communities have power when it comes to decisions about whether and how research will be conducted.
Furthermore, Shore, et. al. (July 2015) declared, "community-based research review processes (CRPs) can provide individual- and community-level ethics protections, enhance the cultural relevance of study designs and competence of researchers, build community and academic research capacity, and help to set research agendas that benefit diverse communities."
As research is a key function of AUCD's network, stakeholders identified the need to ensure community participation in all research processes. Nothing about us without us, a common phrase in the disability rights movement, continues to be pertinent.
Engage diverse communities and people with disabilities in defining research questions, research design and conduct, and reporting results. Engage in Community Based Participatory Research approaches. "Nothing about us, without us."
Connect with cultural communities within State or Territory, partner with them to identify their gifts/strengths/needs, involve them in research, and establish collaborations between researchers and community. Commit to this as an ongoing process, not a one-time event.
Learn about the historical trauma suffered by community groups. Know about unethical research conducted with state and national and international groups. Build/rebuild trust with communities. Be aware that universities/ hospitals/governments have been responsible for unethical research and experimentation with underrepresented groups so relationships may need rebuilding. Learning about trauma experienced can be very difficult, traumatizing, or re-traumatizing. Build self-care and safe spaces into these learning opportunities.
Guide and mentor trainees and young faculty from diverse communities in the skills needed to address gaps in research. Create capacity within those diverse communities and potential leaders to help those communities address those issues.
Create a clearinghouse and provide TA events addressing research that responds to and engages underserved communities, in collaboration with AUCD Central Office and the Council on Research and Evaluation (CORE).
Become familiar with and implement culturally competent research designs.
Undertake research related to diversity and inclusion, resiliencies and disparities, the intersectionality of disability and other cultural identities, the application of evidence-based research to people with disabilities in diverse cultural groups, and the development of practice-based evidence within diverse cultural groups. A paucity of research exists in this area.
Share data to help drive research priorities.
Develop journal articles and other mechanisms to share impact of funded programs, and increase their visibility, outreach and utilization to inter-governmental agencies and the broader community.