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.

USC: How has this cultural mistrust perpetuated disparities in health, particularly when it comes to clinical trial recruitment?

KL:  I think that when you look at the health care system overall, you can see where there might be some concern about whether or not African Americans are getting access to high-quality care. Are they being offered the full range of options available to treat their condition? Studies have shown that African Americans with diabetes are more likely to have their limbs amputated rather than being offered alternative, less drastic treatments that are recommended but also more expensive.

This is also true for mental health conditions — African-American men are less likely to be diagnosed with more common mental health conditions like depression, and instead are more likely to be falsely diagnosed with more severe conditions like schizophrenia. Many African Americans with a mental health condition are simply not diagnosed at all. As a result, they remain untreated or are less likely to receive standard treatments for certain conditions, giving way to more side effects. A recent study from medical researchers showed that African-American children are less likely to receive the same level of pain medications as white children. This could stem from the old myths that African Americans don’t feel pain or other beliefs based on racist notions. These are the same types of beliefs that led to the Tuskegee Syphilis Study, where it was assumed that syphilis didn’t affect black bodies in the same way that it affects white bodies because they are somehow biologically different.

This theme of being overtreated, undertreated, or not treated at all creates mistrust that has persisted from research in the 1800s all the way to today, because this feeling is grounded in real-life experiences.

USC: Could you talk about the USC pilot program that has been launched to address this issue and the role that technology will play in the clinical recruitment process?

KL: The overall goal is to find a low-cost, scalable way of increasing Alzheimer’s disease knowledge in African Americans.

When we work with adult children and their parents, they’re often in crisis mode and have a lack of knowledge and awareness about Alzheimer’s. For many, it’s too late to take advantage of mitigating treatment because their conditions have become too severe. The idea behind this project is to increase awareness of Alzheimer's in an innovative, interesting, and engaging way, through talk shows and simple daily text messages.

We hope to see if different types of text messages can actually translate into increased knowledge and awareness, while also properly gauging people’s attitudes and beliefs around clinical research. We want to see if people will have more positive views about research after this intervention.

USC: Do you foresee this approach being applied beyond the clinical recruitment setting?

KL: I do. If the text messaging aspect of this intervention is effective, assuming that African Americans have widespread access to smartphones and that older people use text messaging, then it can be used to help patients understand a host of other conditions and help with disease management — whether it’s diabetes or hypertension or simply their daily physical activity. The idea of implementing a low-cost, accessible tool to encourage and promote health is useful regardless of the condition.