If our nation is ever going to conquer Alzheimer’s disease someday in the future, we must now be conducting the most vigorous clinical research trials that we possibly can.
And if those trials are to succeed, we must be recruiting more and more volunteers willing to sign on. In addition, if the trial results are to be valid, we must also recruit a variety of minority populations to participate so that the results are representative of society as a whole.
As the Clinical Research Program Director at Banner Alzheimer’s Institute and Banner Sun Health Research Institute in Arizona, I am exposed to the devastation of this disease day in and day out. Fortunately, my job also allows me to be part of the solution and instill hope in people by educating them about the importance of clinical trial research and how they can get involved.
Recruitment for clinical trials is a daunting task. Because many trials require specific demographic and genetic criteria for participation, scientists must consider tens of thousands potential participants, sometimes evaluating as many as 30,000 people in order to fill a 2,000-person trial. As a result, an estimated 80 percent of research studies in the U.S. do not complete enrollment on time because they can’t recruit enough people.
Compounding this challenge is the reality that researchers must also ensure a representative sample of people. Because of the unknown complexities of Alzheimer’s disease, there will likely never be a one-size-fits-all solution, and scientists have concluded that trials must account for the biological and psychosocial variations of all races, ethnicities and genders.
Minority populations are highly susceptible to Alzheimer’s and other dementias. According to the Alzheimer’s Association, older African Americans are twice as likely, and older Hispanics are one and one-half times as likely, to suffer these diseases as older whites. Despite these statistics, minorities are far less likely to participate in the critical research needed to identify potential treatments. This must be changed; but, in order to do so, we must take a deeper look into why.
As an African American woman, I have had the privilege of immersing myself in local communities and gaining a better understanding of what stigmas and barriers to participation exist among vulnerable populations. I’ve found that minorities, and African Americans in particular, are skeptical about participating in research due to a heightened sense of mistrust in the medical community. Events such as the infamous Tuskegee Study of Untreated Syphilis in the African American from the 1930s to the 1970s have left deep scars and suspicions.
Beyond that, recruitment is also hampered by misperceptions caused by a lack of culturally competent communication with clinical trial staff, and by the inability of researchers to persuasively connect minority participation with the benefits to one’s self, family and community.
From my work, I’ve learned a lot about strategies to help overcome these obstacles in the minority community, and here are some of my recommendations:
- Ensure recruiters are culturally competent. It’s not just about having clinical trial staff who look and sound like the people you are recruiting. It’s about ensuring staff members take the time to adopt culturally competent behaviors so that potential participants feel respected and understood. This may seem obvious, but it goes a long way in connecting and encouraging participation.
- Be knowledgeable and transparent. Make sure you engage in conversations armed with all the necessary information about questions likely to arise, such as what participation entails (e.g., blood draws, office visits, etc.), how much time will be required and who is sponsoring/funding the study.
- Explain the anticipated outcomes. Come prepared with information about what the study could mean for individuals, their families and society. When I’ve spoken to communities at their place of worship, I tell them that just like going to church regularly sets a good example and instills religious beliefs that are passed down from generation to generation, participating in clinical research can provide similar benefits for the future.
- Engage with the community. Attend various events, particularly church services. Build relationships with key community members such as influential pastors and other respected community leaders. Talking to a variety of people to understand their fears and concerns will begin to build credibility and tear down mistrust.
- Invest in the community. Consider contributing financially to local organizations or businesses. You may want to purchase advertising space about the clinical study in a local outlet.
- Commit time. Remember that building relationships and credibility will not happen overnight. Keep your end goal in sight and develop a long-term plan for achieving progress.
This effort will not be easy. And it could not be more important.
Dr. Angela M. Allen is the Clinical Research Program Director of Nursing Research at Banner Alzheimer’s Institute in Phoenix, AZ and Banner Sun Health Research Institute in Sun City, AZ.