Over a Zoom toast, the Community Advisors on Research Design and Strategies (CARDS®) recently celebrated a major milestone: their 10-year anniversary.
CARDS is one of the stakeholder engagement services offered by the Wisconsin Network for Research Support (WINRS), based at the UW-Madison School of Nursing. The CARDS are community advisory groups that meet with researchers to offer feedback on a wide range of materials to bring valuable perspectives from diverse racial, socioeconomic and educational backgrounds into academic projects.
WINRS developed the CARDS service in 2010 as a UW partnership with two Madison area community centers, Goodman Community Center and Lussier Community Education Center. Since that date, the CARDS have provided feedback to over 200 researchers from many disciplines to help improve their public-facing materials — such as recruitment and educational documents — and review their study activities from the perspective of participants.
WINRS Community Liaison and Communications Specialist Katrina Phelps says almost half of the members have been with CARDS from its early years.
“It’s a really incredibly deep set of relationships that have formed over those many long years, and I think that’s a testament to the personal value of being in the group for the participants that they want to stay for that long,” Phelps says.
The CARDS service was developed with funding from a National Institute of Health grant awarded in 2010 to Barbara Bowers, a professor in the School of Nursing at UW-Madison. Today, the program is funded by researchers who pay to have their materials reviewed by the CARDS. WINRS also receives support from the School of Nursing as well as a grant from the Clinical and Translational Science Award (CTSA) program of the National Center for Advancing Translational Sciences at the National Institute of Health (NIH).
Phelps says the CARDS help to break down barriers to participating in research by examining the burdens of academic projects on the people participating. Over the years, Phelps says the CARDS provide community members and researchers with an appreciation for lived experience and a fresh perspective on the power of these experiences in research.
“I think we get so caught up in our own written word, science, publications and how we frame our investigations that we forget lived experience is really critical to making those investigations meaningful and connected to the population we’re working with,” Phelps says.
She believes there are many people who are passionate about engaging patients and community members as advisors for research projects across UW-Madison’s campus.
“We hope we can connect and learn from the many units on campus that do community-engaged and health equity work,” Phelps says. “We are really strong as a university, but often somewhat siloed. So, to build core groups with similar passions and goals and see how we can support each other is ongoing work that never ends.”
Looking to the future, Phelps says WINRS plans to share the success of its community-engaged CARDS model and help implement the framework at interested institutions across the nation. Additionally, the CARDS service will extend its reach to many more researchers, educators, government agencies, and businesses in the region.
Larry Orr, a longtime member of the CARDS group, highlights their resounding impact throughout the research community and broader public.
“I think we have a tremendous impact on helping people write and present in a way that people can understand and appreciate,” Orr says. “We’re really good about translating from technical language — from jargon, from just official type documents — and putting it into regular language that people can understand and appreciate.”