‘Who Wants to Be a Study Subject’

Karen Lincoln cares a lot about trust. The highly acclaimed researcher’s top priority is establishing trust with participants in her studies and in the community. She builds rapport through transparency and hosts interactive events that include a “Who Wants to Be a Millionaire”-style game show, a talk show and a “data walk” to share results with those in the studies.

“We let participants know that they’re on the cutting edge of science, and we see how proud they are to hear that they’re pioneers in this work,” says Lincoln, a UC Irvine professor of environmental and occupational health since January 2023. “We tell them, ‘Because of your participation and because you trusted us, we now know this.’”

An expert in the social determinants of health disparities who has conducted most of her studies in L.A., she created the Community Health Information Suite – which facilitates community-based participatory research via the interactive events mentioned above – 13 years ago.

“The key is that every single participant has a good experience,” Lincoln says. “We invite all participants from the studies. We provide transportation and food. We have exhibits, show the tools we used, have posters that share the findings, offer maps of the study sites and have the researcher who handled their blood samples there to answer questions. It’s really engaging in the entire process.”

As director of the Center for Environmental Health Disparities Research, part of the Joe C. Wen School of Population & Public Health, Lincoln understands the barriers that exist in recruiting study participants and collecting biomedical samples, especially from Black people.

“For many African Americans, men in particular, DNA samples are collected when law enforcement is trying to find a suspect,” she says, noting that these samples are included in databases and make the sources potential suspects for years to come whenever DNA is recovered from a crime scene. “Innocent people are getting samples taken, and they want their samples back.”

Surprising results

Lincoln’s “Sleep Tight” study focused on the connection between sleep and cognitive impairment. Black Americans have the worst sleep quality in the nation, as well as a two-to-three-times higher risk of Alzheimer’s disease than white individuals. She wanted to see if the brain clearance system, which eliminates metabolic waste from our brains and works best when we sleep, could explain why this disparity exists.

The study yielded an unexpected finding: “Black Americans who got more sleep than the recommended hours for their age had a higher risk for cognitive impairment,” Lincoln says. “But it wasn’t just sleeping too much that increased the risk. It was that too much sleep impaired the brain clearance system.”

Her “Express Yourself” research revealed that the stress of racial discrimination is related to premature aging in Black Americans. It affects genes, promoting chronic inflammation and reducing the immune response to diseases. “Discrimination gets under your skin, literally, to advance the aging process,” Lincoln reports. Interestingly, the study also found that elevated levels of cultural mistrust – the tendency of African Americans to be suspicious of white people – protected Black participants who experienced high everyday discrimination from the negative health effects.

“These are areas that are important to Black people,” Lincoln says. “Issues around trust, research, brain health, relationships and racial discrimination are things people care about; it’s not random. It signals that we know these things are important and helps engage our study participants.”

Making studies fun

That engagement is key and a reward in itself. Lincoln wants study participants to leave the events with knowledge and tools for better health. Questions about nutrition, a sleep schedule and other aspects of good health are featured in her “Who Wants to Be a Zillionaire” game show, which reinforces what study participants have learned.

Last December, Lincoln and her team hosted a holiday luncheon and presentation – set up as a talk show – at the Yost theater in Santa Ana. Orange County partners had asked for the talk show format after attending one of her events in L.A. It was the first time Lincoln had shared findings with an O.C. audience, and none of the invitees were study participants. The goal was to build community and trust while imparting information about the factors associated with brain health. Another event – at which invitees can sign up to participate in future studies – is scheduled for later this year.

Lincoln’s Community Health Information Suite presents an innovative way to engage, instead of sitting at a PowerPoint presentation or listening to a lecture. Participants come away with a sense of pride, understanding and belonging, along with a fresh perspective on science.

“The health equity focus that [founding Dean Bernadette Boden-Albala] came in with is very important, and that’s pretty much my work,” Lincoln says. “It’s really exciting that my work is aligned with the mission of the school.”

If you want to learn more about supporting this or other activities at UC Irvine, please visit the Brilliant Future website at https://brilliantfuture.uci.edu. By engaging 75,000 alumni and garnering $2 billion in philanthropic investment, UC Irvine seeks to reach new heights of excellence in student success, health and wellness, research and more. The Joe C. Wen School of Population & Public Health plays a vital role in the success of the campaign. Learn more by visiting https://brilliantfuture.uci.edu/school-of-population-and-public-health.