Researchers in the at the at 黑料正能量 have been approved for a $1.9 million funding award from the Patient-Centered Outcomes Research Institute for their study aimed at demonstrating the most effective engagement approach for underrepresented and vulnerable populations in clinical research.
Co-led by , PhD, professor and vice chair of research in the Department of Family and Community Medicine, and , PhD, assistant professor, the challenges assumptions potential participants or volunteers may have about involvement in research.
As Ledford and Jones conducted research on the impact of stress on health in Augusta, they repeatedly encountered participants who saw the importance of the overall topic and wanted to help people like them. But when potential volunteers hear about what exactly they must do as part of the study, they do not volunteer.
The project team wants to change that. This study, designed to help improve the methods of patient-centered comparative clinical effectiveness research, will test if it is possible to increase research participation by creating methods in partnership with the research participants themselves.
鈥淲hen we鈥檙e in the community talking about Dr. Jones鈥檚 research on stressors and breast cancer, women are eager to help up until they hear that we鈥檙e asking them to come to research appointments at the medical college,鈥 Ledford said. 鈥淲omen are particularly hesitant to volunteer when they hear about a blood draw. By working with study volunteers to co-design study protocols, we can design studies that are more patient-centered and culturally sensitive.鈥

These participants are “co-researchers.” Although they are not professional researchers, they work alongside the research team to design the study so that it is directly relevant to the participants and their community.
Co-researchers share control throughout the research process, empowering participants past token participation to shared power. When co-created with study participants, methods will be more trustworthy. The CONFIRM study will test whether creating methods in partnership with the research participants themselves will increase research participation.
Increasing research participation is essential in areas of research like Jones鈥檚 work on breast cancer and stress.
鈥淟ow participation rates of both racial and ethnic minorities in clinical trials are connected to preventable disparities in cancer treatment outcomes and survival,鈥 explained Jones. 鈥淐ONFIRM is a first step to advance health equity in cancer research.鈥

Ledford and Jones鈥 study was selected through a PCORI Funding Announcement focused on building an evidence base to support development of measures and approaches that strengthen meaningful engagement in comparative clinical effectiveness research.
A lot has been learned in recent years about participatory research that seeks to involve the ultimate end users of study results, including patients, caregivers, clinicians and others, as partners in the research process, but there has been little systematic study about which engagement techniques are most effective.
In recent years, a lot has been learned about participatory research that seeks to involve the ultimate end users of study results as partners in the research process, including patients, caregivers, clinicians and others. However, there has been little systematic study about which engagement techniques are most effective, and this study is focused on building an evidence base to support development of measures and approaches that strengthen meaningful engagement in comparative clinical effectiveness research.
The study will include a Community Expert Council, composed of Augusta residents who bring valuable community insights. Led by Britney Pooser, executive director for the , the CEC will meet regularly throughout the study to help make the findings both relevant and meaningful to the broader community.
鈥淭his study was selected for PCORI funding for its potential to strengthen patient-centered and stakeholder-driven comparative clinical effectiveness research by providing evidence about specific engagement methods and measures that promote representative engagement of patients and other stakeholders in research,鈥 said PCORI Executive Director Nakela L. Cook, MD. 鈥淲e look forward to following the study鈥檚 progress and working with the Medical College of Georgia to share the results.鈥
This award has been approved pending the completion of a business and programmatic review by PCORI staff and the issuance of a formal award contract.
is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed health care decisions.
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