Disparities in access to health care and clinical research have a significant impact on the treatment of minority patients.
Health care professionals nationwide contemplate ways to achieve health parity for patients across all demographics. Karen Lincoln, associate professor and director of the USC Hartford Center of Excellence in Geriatric Social Work at the USC Suzanne Dworak-Peck School of Social Work, shares about how increasing diversity among clinical trial participants is key to conceptualizing more effective treatment options for African-American Alzheimer’s patients, and the critical role that technology can play in delivering information to these patients.
USC Suzanne Dworak-Peck School of Social Work: Can you explain how a distrust of medical research has exacerbated the disparity in treatment for Alzheimer’s between African Americans and other racial groups?
Karen Lincoln: There are a number of studies that have identified mistrust of medical research as a reason why African Americans in particular do not participate in clinical trials. To some extent I do agree with this, as I have seen how my previous and current experiences with the health care system can pose a barrier to participating in research.
There is also a lot of discussion about certain historical events that shaped this mistrust, so another thing that we need to do when we talk about mistrust is to actually situate it within an empirical framework. We don’t have a sense of how many people feel this way. Is it general to all health care systems? All kinds of research? We need a better sense of what this mistrust actually looks like for African Americans, and I just secured funding for a new study to actually measure this.
USC: How are you gathering data?
KL: This study will be survey-based. I am first conducting a comparative effectiveness trial, in order to increase Alzheimer’s disease knowledge and get a sense of attitudes surrounding participation in clinical research. I am using a battery instrument to measure cultural mistrust — or the extent to which participants trust or do not trust people outside of their culture — and their attitudes around that notion.
Then, we’re not just looking at mistrust in health care but also cultural mistrust in a broader sense. Certain events and atrocities that have happened to African Americans can, of course, make them weary in terms of participating in clinical research. They may also be concerned about participating in clinical research simply due to a lack of knowledge, mythology around clinical research, and their own negative life experiences.