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A clinical trial? Why? And why me?

Phyllis Jones remembered not knowing what to expect as she filled out a short questionnaire to participate in a clinical trial, a research study that tests whether a therapy or medical intervention works and is safe for a particular group of people.

As it turned out, that small action led to major changes in her life — for the better.

Along the way, she realized she was not only helping herself but could also help family members, friends, even whole communities. That potential to make a real difference motivated Jones to keep going.

As ��«����Ƶ has documented before, clinical trials have a diversity problem. It’s why we have been .

By helping train diverse clinical research coordinators, setting up research centers in underrepresented communities and offering scholarships for future clinical research, our goal is to extend the benefits of clinical trial data to more people from all walks of life.

Jones put it best: “Anything I can do to help, I will. Even my small part makes a difference.”

A Way to Give Back

For nearly a decade, Jones had taken care of her mother as she declined with dementia until her passing in 2018. Several aunts and uncles who lived until 80 also ended up with a form of the disease.

So, when she came across a listing for a clinical trial that was seeking out 50- to 79-year-olds with a history of Alzheimer’s and dementia, she emailed back right away.

As she would come to find out, participating in the study involved changing her lifestyle in significant ways, including the food she ate each day, the kinds of exercises she did and even how she spent her time with loved ones.

But she was eager to try it because of the distress she had felt.

“I saw how dementia happens in people, and it doesn’t matter who you are or what you do or your education, the outcome is the same,” she said. “I watched my mom go through it and hope it’s something we can prevent in the future.”

The two-year-long clinical trial Jones signed up for, known as the U.S. Pointer study, involves roughly 2,000 participants. At the beginning, it meant Jones would meet with a group on a weekly basis near her home in Chicago. She couldn’t wait to get started. “Finally, they responded and said, ‘We have a group starting in your area,’ ” recalled Jones, 64. “I was relieved.”

For Jones, taking part in the research was always her way of giving back.

She was especially encouraged to find out that the study includes volunteers from diverse backgrounds, because she felt like it was important to include people from her community.

She already knew that older Black Americans are twice as likely to have Alzheimer’s or other forms of dementia than their white counterparts.¹ And she thought of her cousins, who, like her, would be faced with protecting themselves from dementia as they aged.

A Long Journey

Signing up was the easy part. Afterward, Jones worked with medical professionals to overhaul her entire lifestyle. Some weeks, she admitted, participating in the trial felt downright grueling.

In addition to the frequent meetings, she spent time deciphering her new diet at the grocery store. As part of the study, she was required to eat leafy green vegetables daily and have enough berries in the fridge to consume them at least four days per week.

Cooking meals with fresh ingredients and revamping recipes to include extra virgin olive oil became top of mind. She also started eating her morning oatmeal without butter.

During the first four months, Jones, who is a software engineer, even paused her job search to save time for participating in the study. “The Pointer Study was my priority,” she said.

More than a year later, it’s still her priority. Jones has slowly increased the weights she lifts and continues aerobic and stretching exercises to keep her muscles strong and lean.

As part of the study, Jones now has access to a gym membership and wears a health tracker that records her daily step count. Most days she wakes up at 5 a.m. to work out: “If I don’t get my exercise, I feel like something is hanging over my head.”

Sticking To It

Even on days she’s too tired to exercise or feels more like eating a bag of chips than blueberries, she’s not willing to quit. While anything processed or fried pretty much needs to be eliminated from the study participants’ diets, they can still eat some of their favorite foods — if they log them.

The study also requires participants to keep up with their social interactions, which Jones makes sure to do when she goes to work or sees friends and family.

Every six months, she meets with a medical team for blood draws and cognitive testing. Recently, her total cholesterol fell by 25 points. “The doctor told me I was doing phenomenal — that put a big smile on my face,” Jones said.

Even with the challenges of sticking to a routine, knowing she’s doing something that benefits others in her community and seeing her own positive results has made it easier for Jones to keep going with the clinical trial.

“I feel very strongly about preventing dementia,” she said. “I have family and friends that share the same history, and it’s something we all want.”

Phyllis Jones is one many individuals focused on bringing diversity to clinical trials for more actionable results. At ��«����Ƶ, we’re doing this, too. We’re working to ensure that our clinical trials have a variety of participants through better industry collaboration, setting performance goals and creating templates for quality future trials. Learn more about how we’re taking action.

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