The Kiosk Project: How Community Scientists Help Improve Participation in Clinical Trials

Clinical trials can help improve health for everyone, but only if they reach the people who need the treatments most. Ensuring that these groups participate is important to make sure clinical trials make the biggest impact possible.

Many people do not join clinical trials because:

• They are not invited or recruited,
• They fear or mistrust medical research,
• They do not know what a clinical trial is or how it works.

Building trust takes time and partnership. Researchers need to work with communities to listen, share information, and solve problems together. Our Community Scientists are helping to make this happen. One example is the Kiosk Project.

What Is the Kiosk Project?

The Kiosk Project was designed to teach people about clinical trials using short videos shown in kiosks located in clinics, hospitals, and waiting areas. Experts at the New Jersey Alliance for Clinical and Translational Science (NJ ACTS) worked with community members to write a script, then hired a health communications specialist to create a 60 second video. The Rutgers—Newark Office of University-Community Partnerships received a pilot grant that allowed us to recruit and pay community members to give feedback on the prototype video.

Community feedback was essential. Their comments helped ensure the video felt real, respectful, and useful to people across New Jersey.

The Role of Community Scientists

Community Scientists were central to making the Kiosk Project work. These are community leaders trained in research skills through the NJ ACTS Community Scientist Program. During the COVID-19 pandemic, our community partners helped spread important health information. They later asked for more training so they could take part in research directly. This led the NJ ACTS Community Engagement Core to build the Community Scientist program, which now prepares local leaders to collaborate with researchers from the very beginning of a project.

For the Kiosk Project:

• Four Community Scientists helped design recruitment flyers and study materials.
• They quickly recruited 40 participants from the community.
• They used their strong community connections to bring in people who were willing to share honest, helpful feedback.

The Kiosk Project study team held two rounds of focus groups. In the first round, we asked people about their experiences with medical research and whether they would join a clinical trial. We also showed them the video and asked what should change. With their input and the guidance of Community Scientists, we updated the video and then held a second round of focus groups. This time, all participants approved of the video. They felt heard and valued. Many even stayed after the sessions to record testimonials.

What Was New About the Kiosk Project?

1. Research Ready Partnerships: Because the Community Scientists had already built trust with community members, everyone was ready to start as soon as funding arrived.
2. Trusted Study Recruiters: Community Scientists understood research and already had experience recruiting participants. They helped explain the project clearly and respectfully.
3. Engaged Participants: Since they were invited by trusted community leaders, participants were invested in the project. They shared meaningful feedback and wanted their communities to benefit from this work.

Why Was the Kiosk Project Impactful?

Participants saw their suggestions reflected in the revised video. This showed them that their ideas mattered. They told the team that they felt valued and that participating made them feel like they were helping their communities.

Almost all 40 participants said they would now consider joining a clinical trial themselves. All of them wanted to join more projects like the Kiosk Project in the future.

“This project is an ideal example of how engagement of the community can further the NCATS mission to improve health to all Americans,” said Dr. Panettieri, Program Director of NJ ACTS.

Anonymous Participant Quotes

“I would join a clinical trial. Now, [participating in this project] has alleviated some of the concerns and fears that I had about clinical trials.”

“[T]he different forms of access [to clinical trial information] at the end [of the video] definitely impacts the amount of engagement... that's meaningful, that will help the community.”

“I think this was really a great idea. Contributing to the research and some of the things that you're trying to bring to the world, I think is phenomenal. I really embrace it.”

“I feel a lot better about trying to do a trial or something in the future because in the beginning I did not feel real good about doing that.”

“But I realize, clinical trials are important and it's important to have an outreach group working with the scientists as they do their research.”