For over 20 years, the Alzheimer’s Disease Center (ADC) at Rush University Medical Center in Chicago, IL has been studying individuals with Alzheimer’s disease and other cognitive and memory problems. Recruiting for clinical studies primarily from people who came to their Alzheimer’s Disease Memory clinic, the majority of Rush’s research participants were Caucasian.
“Up until about 4 years ago, approximately 20 percent of these study recruits were African American, which mirrors the overall minority participation in the other 27 sites across the country,” said Nina Silverberg, Ph.D., Alzheimer's Disease Core Centers Program Director at the National Institute on Aging at NIH.
Then, in 2008, the Rush ADC made a strategic decision to switch its research focus to specifically study older African Americans with no signs of Alzheimer’s, and to follow them over time—for life, if possible—with annual exams and brain imaging. The goal is to learn more about the transition from normal aging to mild cognitive impairment to the earliest stages of dementia, including risk factors and biomarkers for the disease.
This change in study design meant an overhaul in recruitment strategies. Rather than waiting for people to come to the clinic, the researchers hit the streets, conducting outreach and education in the community. It was an intensive effort to recruit African Americans for its clinical core that paid off. Today Rush has close to 350 cognitively normal enrollees, who they see annually at the ADC, and 94 percent are African American.
And, the Rush ADC’s success in minority recruitment does not end there. Another 450 African Americans are taking part in the center’s long-term Minority Aging Research Study. Two other longitudinal studies include Asians, Latinos, and non-Hispanic whites, as well as African Americans. Altogether, about 1,000 minority participants are enrolled in studies at the Rush ADC.
What was the secret to their success? Turns out it is not such a secret. According to Lisa Barnes, Ph.D., a cognitive neuropsychologist who heads the Rush clinical core, part of the answer is adherence to well-known general principles. Outreach to community gatekeepers, building relationships with the community, building trust—these are keys to success, according to the literature and experts in the field.
A closer look at Rush’s outreach strategies suggests that their success lies in taking these general principles and applying them very rigorously and in ways carefully tailored to its own community. The researchers have pursued active, ongoing engagement—ongoing being a key word—with a host of neighborhood groups; paid attention to major barriers specific to the community, such as transportation; and above all, emphasized a policy of giving to the community.
“Our motto,” said Dr. Barnes, “is give before you go asking for something.”
Rush’s experience constitutes a case study of what works in a specific community. Identifying these types of approaches to engage underserved communities is an active area of investigation. Recent focus groups at the University of Maryland help do the same thing for other hard-to-reach populations (see box). Both the focus groups and the Rush ADC’s outreach effort show how general principles can be translated into effective community-specific strategies.
Relationships Before Recruitment
To apply one of the first principles of outreach—connecting with gatekeepers—Rush turns to staff members who come from and are involved in that community.
“We have staff that look like the people we’re enrolling in studies,” said Dr. Barnes. Many are people who were already active in the community when they were hired. Karen Graham, M.A., the ADC’s Manager of Research Recruitment and Education, is a deacon in Chicago’s 8,000-member Trinity United Church of Christ. She and her staff of six are active in the West Side Coalition for Seniors, the Southside Dementia Consortium, and dozens of other community groups.
A second Rush strategy has been to build strong relationships before starting to recruit. “First we find out what the community needs, see how that meshes with what the ADC needs,” said Ms. Graham. “Then we give first.” That could mean participating in a health fair or sponsoring a luncheon at a meeting before talking about recruitment. Having the time to develop relationships, which can take months, has been important, she said.
Much of what the team does—before, during, and after study recruitment—is education. Ms. Graham and her staff are involved in about 600 events a year. Many are at churches, but they also meet with senior groups, fraternities, physician groups, and athletic clubs, often outside of normal work hours. This fall, their September calendar alone included events on three Saturdays and one Sunday.
Sometimes staff take lunch to these presentations, sometimes they talk about other concerns, like diabetes, and answer people’s health-related questions. This approach to education—making time to talk about people’s other needs and questions as well as the ADC’s needs—is integral to their approach.
One important result—“When it is time for the faculty to come in and ask for help with recruitment, it’s not hard,” said Ms. Graham.
Another important factor, she said, is that faculty—a doctor or nurse—is willing to go to the community to present the results of studies. “We make an extra effort to make sure the community we serve is well informed. So, we’re not just asking people to be in a study but making sure they know exactly what they are getting into and what the results are. And they absolutely do want the results.”
Retaining Research Volunteers
Retention is a challenge that can be even bigger than initial recruitment. “It’s not so hard to sign up for a study when all the members of your women’s group are there and you’re all interested,” said Dr. Barnes, “but when you are called to come back the next year, that’s when the challenge [for the researchers] begins.”
Transportation is a barrier among Chicago’s older African Americans, so a major factor in retention for Rush is providing the yearly exams in people’s homes. The ADC sends out a team—a research assistant first, then a phlebotomist, then a nurse, and last a doctor to explain the results and answer questions.
“Giving the results is a huge thing,” said Dr. Barnes. “It helps solidify the relationship.”
For brain imaging—the only part of the annual exam that cannot be performed in the home—Rush sends a car to take the participant to the hospital and provides a snack on the way.
Getting people to come in for imaging has not been a problem, in contrast to what some researchers elsewhere have found. “We thought it might be, but people see it as a service, another perk for a community with limited access to health care,” Dr. Barnes said.
In addition, Rush sends participants birthday cards and regular newsletters and keeps up its involvement with community groups. “We are constantly in the field,” Dr. Barnes said. “To do it right, you have to be committed 100 percent.”
Focus Groups Provide Insights for Recruitment
A new report (PDF, 4.3M) from the University of Maryland provides detailed results of focus groups with representatives of 10 different hard-to-reach populations, exploring ways to increase their participation in research.
The report includes the transcripts of 20 focus groups, two conducted with African Americans, two with bilingual Spanish-speaking persons, and the others with people who have specific disabilities, such as visual or hearing impairment, and with physicians, nurses, parents, and caregivers of hard-to-reach patients.
The key factor to enrolling patients in studies is trust, say the researchers, led by Daniel Mullins, Ph.D., at the University of Maryland’s School of Pharmacy. “Building trust is not a step in the patient engagement process, but rather an overarching paradigm that needs to be ubiquitous…” they conclude in the “Lessons Learned” section of their report.
Their findings are summarized in 10 guidelines for recruiting hard-to-reach populations:
Use a period of "pre-engagement" when recruiting research participants and partners.
Involve the full spectrum of people who will be affected by the research, including hard-to-reach patients.
Provide a lay summary of study findings at an end-of-study celebration.
Build bridges for active patient engagement by creating and maintaining trust.
Realize that people may not be willing to openly disclose medical information.
Bring research to communities where people live.
Keep people up-to-date on what is going on with the research.
Recognize that people make health care choices and participate in research based upon who they are as individuals, not just as patients.
Provide education on exactly what is meant by the term "research."
Make a sincere effort to "give back" to the community.
The focus groups were sponsored by the Patient-Centered Outcomes Research Institute (PCORI), established by the federal Affordable Care Act of 2010 as a non-governmental, nonprofit organization.
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