Mina Raj is an assistant professor in health and kinesiology and the director of the Aging, Caregiving, and Technology Lab. Her research focuses on using patient and clinician perspectives to improve healthcare quality. She uses mixed methods approaches to study ways of integrating caregivers into health care teams for older adults and patients with cancer with the goal of improving the quality of care for patients and supporting well-being among caregivers. Her research also explores the ethical and social implications of these different health information technologies, including privacy and trust implications of health information sharing.
In this interview, Dr. Raj shares her experience as a Small Grant recipient for her research project, “Towards the Inclusion of Minority Patients in ADRD Clinical Trials (IMPACT) through Care Partner Engagement.”
Tell us briefly about your research project.
Our project goal was to tackle the issue of underrepresentation of racial and ethnic minority adults with Alzheimer’s disease and related dementias (ADRD) in clinical trials. Family caregivers have critical responsibilities in supporting medical decision making and healthcare tasks for individuals with ADRD, and this is especially the case for caregivers of racial and ethnic minorities with ADRD. The purpose of this project was to evaluate the current engagement of caregivers in clinical trials to inform programs or policies to strengthen their involvement in clinical trials. This means family caregivers might then be able to communicate and support decision-making more effectively and even address barriers to enrollment for minorities with ADRD.
In what ways did the CSBS Small Grant Program help you to connect with interdisciplinary collaborators at Illinois?
The CSBS Small Grant Program presented a great opportunity for establishing and strengthening collaborations with faculty at Illinois across the system. Dr. Raksha Mudar (speech and hearing science, Urbana-Champaign) and Dr. Vania Leung (geriatrician, Chicago) are collaborators on the small grant and contributed immensely to the project, especially in terms of enhancing the implications of our work in clinical settings. We also worked with Dr. Fawn Cothran from the National Alliance for Caregiving to assess implications for policy and advocacy at the national level. The undergraduate team of research assistants supporting this project was phenomenal and some students who have graduated have gone on to work in the area of health equity research in clinical trials.
What did the interdisciplinary collaboration allow you to do that you would not have been able to do on your own or with collaborators from your own discipline?
As a researcher without current or prior experience as a practicing clinician, it was very important for me to work with collaborators who could provide insights into standard procedures (e.g., for recruiting and enrolling participants in clinical trials) and implications of policy and practice changes. Thus, the interdisciplinary collaboration facilitated more relevant and feasible recommendations for real change in the field.
How did the initial CSBS Small Grant funding aid in your external funding efforts?
The initial CSBS Small Grant helped our team identify multiple areas for improvement in terms of clinical trial representation and support for family caregivers. We happened to find from another project that managing diet is a particularly challenging aspect of caregiving for family members supporting racially and ethnically diverse older adults with ADRD. Since a subset of clinical trials for ADRD are dietary interventions, our CSBS grant has helped us prepare preliminary data to inform larger proposals focused on supporting caregivers with managing diet, including modifications that may be required for clinical trials. We have received funding, for example, from the McCormick Science Institute, to create an online educational resource on spices and herbs for caregivers to support dietary modifications for health conditions including ADRD. This tool could be provided by clinical trial study teams to caregivers in the future to help them with diet modification while maintaining traditional diets.
What advice do you have for Illinois faculty who may be interested in applying for a CSBS Small Grant?
The CSBS Small Grant Program is an excellent way to spark new collaborations and develop a new research idea. Thinking about the anticipated or ideal impact of a potential project can be helpful in identifying collaborators. The CSBS staff are also extremely helpful in connecting researchers across Illinois, so I would recommend working closely with them throughout the process.