Indiana University-Purdue University Indianapolis, Department of Communication Studies Race and Research: Health Communication Strategies to Increase Minority Recruitment and Participation in Clinical Research By: Jalysa King IUPUI

SECTION 1 Background The Indiana Alzheimer Disease Center, also known as the (IADC) is 1 of 29 Alzheimer Disease centers in the country. The center has been in existence for just about 26 years. The IADC has contributed significantly to the field of Alzheimer and dementia by research, education and the characterization of new diseases. The clinical staff at the IADC works diligently to discover genetic mutations and other factors that can cause an individual to develop the disease.

Research History Due to the history within the US in regards to research, and people of color as participants; it is no surprise that there is hesitancy to join in clinical studies. Such examples include the Tuskegee Syphilis Study Clinical Trial participation is particularly low in medically underserved communities, including African American groups and people who live in rural areas

SECTION TITLE GOES HERE IF NECESSARY Health Disparities There have been many studies conducted that have shown that rural citizens and African Americans experience significant health disparities, with factors such as limited access to health care services, lower rates of health insurance, lower socioeconomic and educational status, and cultural and social differences contributing to these disparities

IADC Clinical core study & Outreach, Recruitment and Education Core The Clinical Core recruits, characterizes and longitudinally follows individuals with Alzheimer disease, other dementias and healthy controls. A major emphasis is to identify and clinically characterize families with Alzheimer disease and new genetically distinct non-Alzheimer disease dementias. The Education Core coordinates educational programs for many audiences, from our own research participants and their family members, to medical students first learning about Alzheimer's disease, to residents and fellows rotating through the clinics on campus, to faculty and staff of the Indiana University, to professionals in our local community and throughout the state and beyond.  

Why Do We Need Minorities in Research? Alzheimer Disease and other related dementias are not exclusive to African Americans. While they are twice as likely to develop the disease it can affect anyone. Including minorities in clinical research ensures that the preventions and cures being found are effective for all groups. A treatment that works well for Caucasian participants may not have the same effects on an African American participant. This can be due to something such as genetic makeup. Having a diverse pool of research participants helps keep the work being done patient-centered.

Recruitment Barriers Building trust in the target community Using appropriate methods of outreach, and providing culturally sensitive written materials at appropriate health literacy levels. Targeting underserved and underrepresented populations is possibly with the right strategies in place. By involving communities in the planning phases; targeting captive audiences; and culturally tailoring messages and messengers (ethnically relevant role models in positions of power) to your targeted population (Yancey, et al). In order to increase minority participation in clinical trials, Rabinowitz declares that there are three barriers to break which are, building trust in the target community, using appropriate methods of outreach, and providing culturally sensitive written materials at appropriate health literacy levels. Targeting underserved and underrepresented populations is possibly with the right strategies in place. By involving communities in the planning phases; targeting captive audiences; and culturally tailoring messages and messengers (ethnically relevant role models in positions of power) to your targeted population (Yancey, et al).

Training Objectives This training will be put into practice by the IADC and take two days to complete. The sole focus of the training will be to educate recruiters on the targeted population, why it is important, and how to better engage. The clinical core is looking to increase and recruit African American adults 65 and older. African-Americans are two times more likely to develop late-onset Alzheimer's disease than whites and less likely to have a diagnosis of their condition, resulting in less time for treatment and planning.

SECTION TITLE GOES HERE IF NECESSARY Training This training will educate recruiters on Alzheimer’s and Dementia, and Mild Cognitive Impairment This training will go over the history of African Americans participation in medical research, and why there is still resistance. This training will go over the importance of involving more minorities in medical research. This training will discuss effective health communication strategies to educate and recruit African Americans for the clinical core study.

Next Steps This training program will be implemented and mandatory for all incoming IADC recruiters. Create an online version and tutorial to better educate IADC recruiters and volunteers Develop a study that compares minority recruitment numbers of the past two years to see if the training has helped.

Thank You! Contact Information Jalysa King Jalking@iu.edu