Co-Creating Novel, Feasible and Inclusive Research Methods (CONFIRM)

Project Summary

The lessons learned and evidence discovered from research studies are limited by who volunteered as participants in each research study. Currently, research studies do not represent the full diversity of the US population. Black women are particularly underrepresented in research studies. Community engagement is one method to increase research participation. However, there is a lack of evidence for recommending a particular level of community engagement over others. This project team of scientists, physicians and community members developed an innovative approach to increase full participation of Black women in research studies. The proposed project, Co-Creating Novel, Feasible and Inclusive Research Methods (CONFIRM), is designed to test if it is possible to increase research participation by creating methods in partnership with the research participants themselves.

As the project team has conducted research around the impact of stress on health, they have repeatedly encountered Black women who see the importance of the overall topic and want to help people like them. But when they hear about what exactly they have to do as part of the study, they do not volunteer. The project team wants to change that. They plan to recruit participants to answer research questions, and then with those volunteers they will decide together on the tasks and activities volunteers will complete in the study. In contrast to how science is usually done, this innovative approach switches the order of design and participant recruitment. Volunteers will be enrolled and engaged before methods are selected. The project team will engage research participants as 'coresearchers.' This word emphasizes the act of carrying out research with and by participants who are not professional researchers, instead of to, about or for them. Participants will be engaged as co‐researchers to recognize their unique experiences and create a give-and-take relationship between the professional research team and participants. Co-researchers share control throughout the course of the research. This empowers participants past token participation to shared power.

The project team proposes that a group of Black women will design research tasks and activities that are acceptable, feasible and relevant to themselves and their community. To test this approach, the team will recruit 240 women to participate in a study about stress. The women will be randomized to either be a part of the stress study the project team has already designed or to be a part of a group of women who would meet every other month in small groups with the research team to develop the best scientific methods to answer questions about stress.

The project team will then compare the two groups of women. First, the project team will keep clear documentation on the number of women who sign up and then potentially drop out of the study, on the number of survey items women fill out and how similar and different the women are based on their home and work responsibilities. Second, the project team will use surveys to collect information about how women think about science, researchers and the potential impact of the study. The project team expects that when women are active participants and decision makers for a study, they will develop trusting relationships with the research team and see a study as more impactful for their community. Third, when women do decide to not complete the study, the project team will interview them about why they chose to leave. Lastly, throughout meetings with the women, a note taker will keep detailed notes about how meetings work.

Throughout this process, the project team is also meeting regularly with community members who are not part of the study to talk about the study the women are in. They include this outside perspective to help them think about the process with other people in the community in mind. The project team expects that many scientists will not be open to allowing research participants to have a voice and power in decisions about the research they are in as it is happening. To help them work through this possible resistance, the project team will meet with scientists from around the country to talk about the decisions made with the women in the study. By demonstrating the effectiveness of this innovative approach, the project team aims to empower people to become more involved in research. By advancing equity through shared power, the project team aims to increase the relevance, trustworthiness and usefulness of research findings.