Section 2: What is Community-Engaged Research (CEnR)?

Are you new to research as a community partner? Let’s start by covering some important terms to help guide your understanding of how community engagement fits into the big picture of research.

First off, what is research?

The purpose of research is to learn new information beyond what is already known.¹ There are several different types of research studies that can include humans, animals, plants, and other organisms.¹ For the purposes of this toolkit, we’ll be discussing research that involves human participants (also called human subjects research).

Research can be performed by many different organizations, such as academic institutions, healthcare and medical facilities, businesses, community-based organizations and government agencies.³ Depending on the group conducting the research, study goals may include advancing our understanding of human behavior and cultures, evaluating the effectiveness of medical treatments, answering why something is happening (cause and effect relationships), improving community conditions, assessing marketing strategies, and/or identifying historical patterns.

In general, research projects are designed according to a series of stages, starting with identifying a problem or issue and ending with study findings being shared and a call-to-action.

Research studies usually start with a research question. There are several methods researchers use to try to answer a research question, which may include:

• Interviewing people one-on-one or in a group setting (focus group) to learn about their experiences and/or perspectives
• Asking people to complete a survey, either in-person or online
• Providing patients with medications, devices, or behavioral changes (such as increased exercise or eating healthier)
• Collecting scientific samples (such as blood or urine) for analysis and experiments
• Looking at and combining data that others have collected⁴

Without getting to know a community and listening to its members, researchers may miss important information. For example, if a researcher is conducting a study to see if providing vouchers to cover the costs of fruits and vegetables at farmers markets increases healthy eating to improve diabetes, it is important to learn about the community first. Without knowing the community and working with its members, researchers may miss important information. In this situation, if the local community members with diabetes don’t have a lot of experience preparing the fruits and vegetables available to them or an easy way to get to the farmers markets due to a lack of transportation, then the day-to-day experiences of the community will not line up with the study, and the results won’t be helpful. A failure to consider the unique needs and challenges faced by the community under study can interfere with research findings and limit their potential benefits for people.⁵

So how can we make sure that research studies match the needs of patients and other members of the community that we are trying to help? You guessed it! By researchers seeking input from community members, like yourself, who have a true understanding of real barriers within the communities they serve.⁶ This approach is known as community-engaged research (CEnR).

So how is community-engaged research different from traditional research?

In traditional research, the researcher designs a study and performs the research on the community, typically by recruiting patients or other members of a community to participate in the study that the researcher has developed. In community-engaged research, the researcher partners with the community to develop and conduct the research through shared decision-making throughout the research process.⁸

The involvement of the community in research is a powerful way to bring about environmental, social, and behavioral changes to improve overall well-being.⁹ CEnR is being recognized more and more as an important way to share research results back to communities.^10,11

It takes a village! For CEnR to work best, a group of individuals work in partnership toward the same goals. Community partners bring an important voice to the research project and may point out areas of interest or concern that may not have been previously thought about by researchers. Connecting the community to the research project opens it up to help more people by shifting the focus from one person to the entire group. This allows for more inclusion of the cultural values, diversity of interests, and perspectives that exist within a specific community to impact the research, thus making it more helpful to everyone.⁹

Typically, the main members of a research study include:

A Researcher or Academic Partner – Individual researchers and their teams, as well as research organizations. Researchers are often connected to a hospital, academic medical center, college or university, and/or another organization:

• Principal investigator (PI): Lead researcher for a study; assumes full responsibility for study.
• Co-investigator(s): A researcher who contributes significantly to a study.
• Project manager(s): A research team member who manages a research study and oversees research staff.
• Project coordinator/human research technologist(s): A research team member who coordinates day-to-day study operations.

Conducting any research study, including CEnR, often involves collaboration with other research support services, such as individuals who assist in the proposal submission process, those that help manage your research budget, data managers and statisticians to assist with data collection and analysis, among others!

A Community Partner – Individuals (such as patients, caregivers, clinicians, policy makers, educators, and other community members) or organizations (such as community groups and human service agencies specializing in housing, employment, food security and education, clinics, health departments, advocacy groups, faith-based organizations, small businesses, and other groups representing communities and cultures) who share their voices, perspectives, and knowledge to help with research. ‘Stakeholder’ is another term to describe community partners.^13,14

Every CEnR project is unique, and the involvement of a community partner in a study can range from a little to a lot.^15-17 Some projects may include a small amount of involvement, such as reviewing and giving feedback about the study’s ideas for helping the community. Other projects may include much more involvement during important phases of the research, including determining the problem to be studied, conducting the research, and sharing the study results. Some community partners may be engaged in a research study at varying levels over the course of the project. For example, a research team may be partnering with a local agency that helps to decide the research goals at the beginning of the project but isn’t actively involved again until near the end when sharing the results of the study with community members.¹⁸

“Community involvement in all phases of research can help to ensure that new treatments and health discoveries are more effective and meaningful for the people they are intended to reach.”
– Andrea Murray, Project Director, REACH

Research follows a series of stages. Not every project has all of these, but they generally follow along these lines.

Reproduced with permission: Research: What’s Community Got to Do with It? Toolkit for Community Organizations Interested in Research. (2019). Center for Clinical and Translational Science, University of Illinois at Chicago. Retrieved from http://www.ccts.uic.edu/content/target-populations-toolkit.

Regardless of the amount of involvement in a CEnR project, community partners offer inside understanding and knowledge of the community and culture that may otherwise be overlooked by an outside researcher.¹⁹ This important information improves the outcomes of the research project and makes study findings more likely to be helpful to many more people.