April 23, 2024

“Partnership for the Life Course of Research”: Promoting Diversity in Alzheimer’s Research 

Kenzie Lock

Three people gather around a table for cognitive testing at the Brain Health and Community Resource Fair.

Hispanic/Latino individuals are 1.5 times more likely to develop Alzheimer’s disease compared to their non-Hispanic white counterparts. Despite these disparities, studies consistently show that minoritized groups are underrepresented in research studies. This under-recruitment can not only perpetuate health disparities but also impact the generalizability of findings and effectiveness of Alzheimer’s disease treatments. To address this issue, the University of Washington’s Alzheimer’s Disease Research Center (ADRC) partnered with researchers from the Health Promotion Research Center (HPRC) to increase participation of all underrepresented groups in their ongoing Clinical Core research, starting with Latinx communities with whom the team had long-standing partnerships.  

Principal investigator, Linda Ko, along with research scientist Sonia Bishop, research coordinators Katherine Lopéz and Janet Rojina, and graduate research assistant Kelley Pascoe of HPRC, came together to expand and grow the initial ADRC partnership with Hispanic and Latino communities in the Seattle area by continuing to build trust in the ADRC. “A lot of communities are really wary of joining research – and for good reason,” said Lopéz, referring to historical injustices and systemic discrimination within the world of research. “Having a connection to the community and making connections with people they already trust is necessary, especially when you’re working with older adults.”

A Community-Based Approach

Recognizing the limited capacity for language and culturally concordant team members, they made sure to build an intentionally bi-lingual and bi-cultural team. “It’s very important that our team look like the community we collaborate with, to create something by the community and for the community,” said Bishop. They also established a new Community Advisory Board (CAB) composed of trusted leaders from community-based organizations (CBOs). The CAB could vouch for the team’s intentions with community members and provide guidance and direction.  

People gathered around a table at Cafecito con Charla.

Together, the team and CAB launched a multi-pronged approach to build trust and garner interest and participation in the research project. “You have to do a little bit of everything to make sure you have a presence in the community,” said Rojina. “You want to make sure the community knows who we are when they see us and that we’re someone they trust.” The team attended local tabling events and partnered with CBOs to create new events for community members. This included Cafecito y Carla (Coffee Chats), a small, relaxed group setting where people could learn more about the research, ask questions, and get to know the team members. “The most important part of research is building relationships,” Rojina noted. “Once you have a relationship with the participants, they’ll be more willing to listen and better able to decide what’s best for themselves.” 

The largest community event the team hosted was the Brain Health and Community Resource Fair, adapted from a previous event created by the National Alzheimer’s Coordinating Center (NACC) to increase Native American participants in AD research. The interactive event kicked off with an introductory presentation on Alzheimer’s disease and brain health from Dr. Karen Torres, a bi-cultural, bi-lingual neuropsychologist from the ADRC. Afterwards, attendees cycled through interactive learning stations where they could learn about brain health, nutrition, and physical activity. Participants could also engage in cognitive testing, get their blood pressure taken, and watch educational videos on AD. Additionally, the event had a station where participants could meet researchers, ask questions, and enroll in the research study, should they choose to. 

Making Improvements

By leveraging events and building relationships and their presence in the community, the team created welcoming spaces that resonated with Hispanic/Latino communities. Over the course of a year, Hispanic/Latino enrollment in the research study increased from 3 individuals in 2022 to 26 in 2023. “Engaging underrepresented groups is not necessarily hard, it’s just different,” explained Rojina, “It takes time, patience, and flexibility; you have to be adaptable to meet the needs of the community.”  

While the increase in participants was the desired outcome, Bishop explained that the real measurement of success was the trust built within the community. “We had a few people who were already enrolled in the study and had gone through their first visit, and they ended up coming to a Coffee Chat and bringing other family members who they thought could benefit from participating in the study. They understood the importance of the study and trusted us enough to invite their loved ones to be a part of this program. That’s really how research grows, through trust and word of mouth.”

Community interest in the project has only increased over time, and the team has found that there are more people who want to participate than they can currently accommodate. “We’re doing our best to meet the needs of the community in every way we can and with every ask that we get,” Bishop affirmed. “Even now at max capacity, we are transparent with where we’re at and tell community members that it could take a year or longer to get them into the study.” In the meantime, the team will continue their educational efforts and plans to host another Brain Health and Community Resource Fair in the Yakima area. 

Next steps

Looking towards the future, the team hopes to use the lessons and approaches learned during this project with other communities to continue expanding Alzheimer’s disease research. The CAB are vocal advocates for providing these research opportunities to all communities and hope to pivot to focus on Asian American and Pacific Islander communities next. Nationally, the languages for cognitive testing used in Alzheimer’s disease research are only in English and Spanish, which can make it difficult to include people who speak other languages in studies. While they advocate and wait for more translated testing materials, the team plans to continue educational events and to build trust. 

Reflecting on their project, its successes, and the new challenges the team will face, Pascoe emphasized that future successes will come through time and with partnership. “Partnership is for the life course of research. It’s not just for recruitment or just having someone walk in the door and join the study. It’s partnering with them all the way to results, sharing results, making sure that those results make sense, and then asking them what other questions they have and what other directions do they want to take,” she articulated. This comprehensive approach underscores the team’s commitment to community engagement beyond mere enrollment numbers. 

Alzheimer’s is projected to affect 13.9 million Americans by 2060. Diversity in research will be essential to ensure that findings and treatments are relevant to everyone. Through intentional relationship-building and inclusive practices, researchers can not only increase enrollment and make research more accessible, but foster trust and collaboration to create community-led solutions that are impactful for all.  

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