Celebrating a Decade of Success with the CARDS

By Megan Hinners

Members of CARDS celebrate 10th anniversary on Zoom
Goodman Community Center CARDS® group
celebration on Zoom
Lussier Community Education Center CARDS® group

Above: Members of the Goodman Community Center and Lussier Community Education Center CARDS® groups gathered online in January to celebrate their milestone tenth birthday.

WINRS logoFor a little over a decade, the Wisconsin Network for Research Support (WINRS) has been focused on patient and community engagement, as well as providing innovative services to help clients and researchers connect with participants and key stakeholders throughout every stage of their projects.

Housed within Signe Skott Cooper Hall and supported in part by the UW–Madison School of Nursing and a grant from the Clinical and Translational Science Award (CTSA) program of the National Center for Advancing Translational Sciences within the National Institutes of Health (NIH), WINRS strives to bridge the gap between patient and public stakeholders and research teams, bringing underrepresented voices into the development of research and educational programs in an effort to reduce health disparities.

“Why are health inequities so stark in the very communities often underrepresented in research? Is there any connection between the two? If there was any way to move the needle on getting more participation in research, would that have any impact?” — Gay Thomas

CARDS logoTheir innovative work and unique services include linking researchers to local community partners called Community Advisors on Research Design and Strategies (CARDS®), a group conceptualized by WINRS with the goal of helping to address the lack of diversity in research-based initiatives. By helping researchers more effectively communicate and connect with their target audiences, the CARDS® are helping to improve health equity one community advisory board meeting at a time.

The CARDS® can be described as two trained, long-standing focus groups whose primary role is to advise researchers. The wide array of racial, ethnic, and socioeconomic backgrounds that are embraced in the CARDS® makeup are voices that are often rarely represented in the world of academic research.

“As we were developing the proposed infrastructure of our program in our grant proposal, we kept running into questions,” explains Gay Thomas, director of stakeholder engagement for WINRS. “Why are health inequities so stark in the very communities often underrepresented in research? Is there any connection between the two? If there was any way to move the needle on getting more participation in research, would that have any impact?”

Under the guidance of Barbara Bowers, PhD, RN, FAAN, associate dean for research, professor, and Charlotte Jane and Ralph A. Rodefer Chair of the School of Nursing, WINRS was launched in 2010 with the goals of increasing the number and quality of health research studies in Wisconsin communities experiencing poor health outcomes, as well as increasing employment opportunities for community members. The CARDS® model was introduced shortly after, and the WINRS team of Thomas, Betty Kaiser, and Katrina Phelps have been thinking outside the box ever since.

It started with building an innovative and solid foundation for the focus groups. “We decided to work with trusted brokers within the community in order to recruit members to join the CARDS®, partnering with local community centers and utilizing a liaison within those centers to tap into the community,” says Thomas. The team partnered with two local centers, Goodman Community Center on the near east side of Madison and Lussier Community Education Center on the west side, and the rest is history.

“The idea was to bring together a group of people, and then bring the researchers to them,” explains Thomas. “Instead of having the focus group members come to an unfamiliar setting on campus, the goal was to flip the setting and have the groups meet where they are comfortable in a more familiar setting. A place where community members feel more at home. By bringing the researchers to them, it creates a structure where the expertise is then in the hands of the focus group, and the researchers are coming to them to ask for their assistance and input.”

WINRS celebrated their milestone ten-year anniversary in 2020, which included commemorating a decade of success with the CARDS®. Looking back at the last decade, it is easy to see the impact that has been made. “At this point, we’ve had over 200 meetings with over 100 different research teams,” says Thomas. “We have a lot of repeat business, which I think is a sign of satisfaction.”

The CARDS® have played a direct role in influencing a wide variety of patient- and public-facing materials, from how to increase participation in colon cancer screenings, to developing materials to help people better communicate with their surgeon about high-risk surgeries, as well as developing materials for depression studies.

“The breadth of topics and types of research has been amazing,” Thomas explains. “It’s been everything from recruitment materials, written materials, websites, smart phone apps, videos, health education – it’s just been fascinating and it’s always stimulating. It’s always something new every time. But in that newness, there is also sameness.”

It’s that sameness that gives CARDS® members the confidence to continue to use their voices to make a difference. “They trust that they are going to be respected,” Thomas points out. “They know that they are going to be with people who respect them, they know that they can speak frankly in front of the group, and they know that they can be confident and comfortable with the flow of the meeting.”

During the anniversary celebration, which culminated in two Zoom gatherings to revel and reflect on how far both WINRS and CARDS® have come over the years, it was easy to see that what has developed with the CARDS® is a uniquely symbiotic relationship founded on mutual respect, unending support, and whole-hearted appreciation for each other.

The benefits don’t just stop with the researchers who use the service. CARDS® members, some of whom have been involved since the beginning, speak fondly of the family that it has evolved into over the years. The no-judgment atmosphere and collaborative model that allows everyone to have their time to express their thoughts and opinions has allowed the two separate groups to form steadfast bonds built on trust and collaboration. Members also note the benefits of being able to approach their everyday lives from more analytical angles, as well as being able to share these skills with their fellow community members.

As WINRS sets its sites on the next ten years, Thomas has high hopes for the CARDS® model. The ultimate goal is to build similar models at other institutions, creating additional learning communities and tailoring those groups to fit the desired needs of the organization. “I would love to see the CARDS® model expanded so that other communities, institutions, researchers, and policy makers can utilize similar opportunities,” Thomas adds. “It’s a resource that I would like to make more widely available.”

For now, the CARDS® will continue to forge ahead with their unique practices and methods that continue to produce exceptional results. By amplifying the voices of their communities and advocating for the health and wellness of their friends and family, the CARDS® are truly making an impact and helping to innovate how researchers and organizations are communicating with those that they hope to serve.

Learn more about WINRS and CARDS®.