Community-engaged approaches effectively address health care disparities and provide trustworthy, science-based information essential for all communities to thrive. The NIH Community Engagement Alliance (CEAL) partners with community organizations to conduct research to improve the health of communities.
CEAL teams work with community members and community organizations (such as faith communities, nonprofits, community centers, schools, and businesses) to make sure that research studies consider and include the specific needs and voices of the communities of focus.
Institutes across NIH provide national research leadership and expertise to CEAL teams.
What is community-engaged research?
Community-engaged research includes local people in the research process, especially people who could benefit from or be affected by the research. The idea is that research teams and communities work together as equal partners to create and carry out studies, analyze data, and share study findings.
Community representatives bring their lived experiences, needs, and strengths to these studies to:
- Craft research questions and inform study details.
- Collect research data using community-informed strategies to connect with participants and get meaningful data.
- Advise on policies and decisions related to safe and effective conduct of the research.
- Co-create interventions or programs that have a good fit with the community.
- Design appropriate materials and messages tailored for specific cultures and languages.
- Analyze and report data in understandable ways to the community and acknowledge unique strengths and challenges within groups of individuals.
When there are deep connections and collaboration between researchers and communities, the research reflects a community’s strengths, beliefs, customs, needs, and cultural sensitivities.
What are the benefits of community-engaged research?
Community-engaged research can:
- Address health disparities by making sure that research is designed to address the needs of communities most at risk. It’s important to include people with different backgrounds and experiences in research studies to make sure the results reflect all people.
- Build trust in science by including people from the community in research projects as equal partners from the start. This ensures that everyone clearly understands what is being studied, how the study is being conducted, and what the findings mean.
- Improve health knowledge by working with trusted messengers, such as family doctors and pastors, who listen to the questions, worries, and fears that people share and provide accurate information to address these issues.
Why does research need to include people of different backgrounds and lived experiences?
A person’s culture, family history, job, and where and how they live are just some of the things that can affect how well a medicine, treatment, or other health intervention will work for them.
Treatments must be proven safe and effective for all, so research studies need to include people from diverse backgrounds and lived experiences.
Why do some communities mistrust research?
Some research studies in the past took advantage of people, putting them at risk and even costing them their lives. Racial bias among health care providers and institutions remains an issue, and continued efforts are needed to overcome inequities in our health care system.
It is common for people not to trust researchers and medicines and to avoid volunteering for research studies, even when the studies may directly benefit their lives. Today, research studies have safeguards to guarantee safety and protect participants’ rights.
What is CEAL doing to address health disparities and increase diversity in research studies?
To guarantee that all communities benefit from scientific advances, research must include people with a variety of lived experiences and living conditions, as well as characteristics like race and ethnicity, age, sex, and sexual orientation. Through its programs, CEAL supports research teams, programs, institutions, and other entities conducting community-engaged research with communities and groups where health disparities exist.
CEAL is aligned with the conceptual model for community engagement published by the National Academy of Medicine.
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