When a researcher or a center starts work on a project, there’s often a lot of attention on the new work. Stories might talk about grants or project goals or spotlight researchers and staff.
When a project is ending, though, there’s often less attention. It’s not as common to see stories about a study or project that’s wrapping up.
At CHER, we’re taking project closings as opportunities to reflect. To look up, look around and take a breath as we prepare for what comes next.
Our New IDEAS project team is doing just that. The project is closing out some of its active work and moving into data assessment and evaluation. We met with them to hear their reflections on their work with New IDEAS.
What is New IDEAS?
New IDEAS is a study with an important focus: expanding on a previous study (IDEAS). The original IDEAS study asked whether PET imaging tests would help diagnose and treat memory conditions like Alzheimer’s.
IDEAS was important work but the people in the study were mostly white (about 80%). That data is valuable but it doesn’t represent all of the people in the United States with memory conditions. And because of a lack of data and barriers to getting care, like underfunded transportation systems, conditions like Alzheimer’s are worse for non-white patients.
New IDEAS was created to help add data from a wider group of people. The study aimed to have a “clinically diverse group of Medicare participants.” Both IDEAS and New IDEAS had study participants who were Medicare beneficiaries.
New IDEAS recruited people to the study from across the United States. The team at CHER was responsible for engagement in eight metro areas in California, Texas, Illinois, Florida, New England and the Mid Atlantic.
The study was open to everyone. And there was dedicated work to have more Black/African American and Hispanic/Latino people in the study.
CHER was a partner in New IDEAS with the American College of Radiology (sponsor and manager), the Alzheimer’s Association and Vanderbilt University.
Championing a study
We talked with Shikira Flounory, Andrea Mendoza and Timothy Simmons about the work CHER did with New IDEAS.
Flounory, Research Program Manager, explained what CHER added to the project. “We’ve led all of the community engagement efforts and that was through our Champion network, she said. The network was “conceptualized and executed by the leadership of Andrea and Timothy,” she added.
To Flounory, the “community engagement specialists [Andrea, Timothy and a former team member] are the heart of what UNC” brought to New IDEAS.
The Study Champions were “support personnel, leaders in their community” working in all eight metro areas covered in the study.
Flounory explained that her team worked with Champions “from San Francisco and LA [Los Angeles] all the way to the East coast where we had folks in Philadelphia, New Jersey, Delaware and our Champions would host events and disseminate materials to potential participants.”
“Essentially…folks could kind of enter the pipeline in order to potentially be enrolled into New IDEAS. We were kind of the furthest upstream, the first point of contact for a lot of folks to, you know, get interested and learn about the study,” she added.
Mendoza, one of the Community Engagement Specialists, told us what the Champions did.
Study partners at Vanderbilt University created materials for the Champions to use. The materials were crafted to be culturally relevant and were tested by focus groups.
The CHER team shared these materials with the Champions and “were able to create training to get them informed about the [New IDEAS] study,” Mendoza said.
She also explained that the CHER team “told [Champions] what their responsibilities would be in terms of sharing that information” and that “we really just tried to support them as much as we could because a lot of them…they’re all in different parts of the country.”
Being connected to the Champions and hearing from them was one of the most important parts of the work, according to Flounory, Mendoza and Simmons.
Reflecting on the work
One of CHER’s main strengths is community engagement. That was clear in all the work with the Study Champions for New IDEAS. By the time the study stopped adding new people, it had enrolled 6,061 people. Forty-two percent of people in the study were Black/African American or Hispanic/Latino.
Mendoza reflected on “one of the biggest accomplishments” of the CHER/Champions work. “We really pushed for something to help with transportation because we noticed based on Champion feedback that transportation was a major concern for a lot of people because a lot of the dementia specialists that the person in the study has to see, a lot of them were not really in areas that were nearby, you know where people live,” she explained.
Because the CHER team was working closely with Champions in each of the eight sites, they could hear real-time issues that were keeping people from joining New IDEAS.
Mendoza said that because of the Champions’ feedback, “the [study] leadership team was able to actually partner with another company that provided the transportation for the PET scan visit (free for the for the participants).”
This adjustment directly led to more people being able to be part of the New IDEAS study.
Menoza added, “That’s just being able to bring back what we’re hearing and helping to make the [study] more accessible to people.”
Flounory shared that part of what made the Champion network successful was partnership. In each of the study areas, the team partnered with field offices of the Alzheimer’s Association.
“Some of our champions were already Alzheimer’s Association volunteers,” Flounory said. She added the connection through the Alzheimer’s Association “was really helpful for us to begin to get our Champion network up because we didn’t have any existing relationships with any outside community partners at that time that we were starting to, you know, recruit Champions.”
Building with communities
The team at CHER didn’t reinvent the wheel. Instead, they worked with partners who already had people in the community. By partnering with the Alzheimer’s Association, it was faster to get Champions trained and ready to help people be part of New IDEAS.
While the team is proud of their work and what the Champions accomplished, they expressed some mixed feelings about the study’s close.
Mendoza said, “For me it feels like a combination of some anxiety about what’s coming next and then also, you know, feeling proud of what we’ve done.” She is taking this moment for reflection: “Transitioning to this new stage of winding things down is obviously, you know, a good time to reflect on what we’ve done.”
Flounory agreed and added that there are a lot of administrative tasks along with “emotional pieces.”
She’s been with the project since the beginning and that brings a unique perspective.
“I was the first person on this project outside of the PI [Principal Investigator] and the Co-PI so I’ve been on New Ideas since 2020…and I literally watched it develop from an idea and…, you know, it’s like— you know how you see B-roll of the past? It seems like everything moves in slow motion,” she said.
Flounory added that “I think that’s kind of what’s happening for me now of remembering this was just an idea to now, you know, it being a full-fledged project and us having to sunset it.”
Timothy Simmons, another Community Engagement Specialist, agreed with Mendoza and Flounory. He’s been with New IDEAS for the last year.
He shared that there are “a lot of pluses and mines for me, kind of being on the back end of the study, just being here over a year.” One of his reflections is on the work with communities that’s ending as the study wraps up.
“We’ve got a lot of great relationships in the community,” he said, adding that “that part was very interesting and meeting a lot of great people, especially with the my team and building off of their knowledge, and I will say, yes, it’s definitely bittersweet.”
The team members are excited about what’s next for them, but kept their community connections in mind. Simmons shared that “it’s been a little bit challenging to encompass [ending community work].” His overall reflection was shared by the whole team: “I think the team as a whole has done great work and we’ll continue to do great work as we close out the project.”
What’s next?
New IDEAS isn’t adding more people to the study and it is winding down. But that doesn’t mean the CHER team is walking away.
Their next steps are all about understanding what worked and what they can share with other research teams.
The team has sent out surveys to the Champions to understand what worked for them and what could have helped them. They surveys are going out to Champions, who usually served a one-year term, and student Champions, who usually served a semester term (3-4 months).
They’re also doing “data cleaning and data management,” led by Flounory.
Finally, Mendoza and Simmons will be meeting with partner and Champion teams to share and celebrate what they accomplished together.
In addition to the work of completing New IDEAS project evaluation, the team is helping Champions continue work in their communities. Some Champions weren’t already volunteers with local Alzheimer’s Association chapters. After their work as Champions, they’ll have the opportunity to take what they learned and become volunteers. This will directly support people in their communities who need dementia care.