About the Wisconsin Network for Research Support
Overview of WINRS
The Wisconsin Network for Research Support (WINRS) provides a suite of tailored consultation services that address a persistent problem for researchers – how to effectively engage participants, especially people from under-represented communities or “hard to reach” populations, in research programs. These services are available to researchers across the country and are relevant at all phases of project development, including preparation, implementation and evaluation. WINRS staff work in partnership with clients to understand their specific priorities, goals and desired outcomes.
Description of Consultation Services
1) “Community Advisors on Research Design and Strategies” (CARDS)
An innovative consultation service created by WINRS, the CARDS are groups of lay community members from diverse backgrounds who review materials developed for research, education, and outreach. Since 2010, WINRS staff have coordinated meetings at local community centers between clients and the CARDS, who provide unique feedback on written materials, websites, smartphone apps and project plans.
While "Community Advisory Boards" are quite common, the CARDS groups are different in several key ways:
- All lay community members (no group members from academia)
- Recruited from community center programs, such as food pantries, parenting programs, women's support groups and senior meals
- Complete 4-hour training, developed and delivered by WINRS staff, to prepare them to give effective feedback on research and educational materials
- Provide feedback (in-person or via teleconference) on materials related to any topic, area of research or health condition
- Compensated for each 90-minute meeting
- WINRS co-Directors manage all meeting logistics, facilitate CARDS sessions, capture group discussion and deliver detailed follow-up reports, revised materials and other recommendations to clients.
2) Develop and deliver tailored training programs for community/patient advisory boards
WINRS staff can adapt the basic CARDS training program to meet the training needs of advisory boards for specific programs of research. WINRS training programs are grounded in adult learning principles and are appropriate for use with low-literacy learners. WINRS also provides on-going coaching/mentoring to support continued development and maintenance of lay advisory groups.
3) Revise consumer-facing materials using plain language principles
Examples include health education resources; web pages; survey or interview questions; video scripts; and community abstracts for non-scientist reviewers.
4) Advise on strategies for successful recruitment and retention of study/program participants
Strategies include identifying potential community partners; anticipating and overcoming barriers to participation; suggesting proactive approaches to improve retention; and recommending mid-course corrections.
Feedback from Researchers on WINRS Services
“The CARDS experience was substantive, useful, interesting, and also really fun.”
“The CARDS provided wording suggestions that significantly improved our data collection instruments.”
“Gay and Betty have developed a form of expertise that the research world badly needs, as have the CARDS focus group members. I was impressed that the group functioned so well and respectfully with one another, while at the same time maintaining their integrity and independence as individual respondents with diverse perspectives.“
Feedback from CARDS on Impact of Participation
Value of Service to Researchers
“We help researchers ‘speak English that really is effective with people on the street’.”
“People who need the information most aren’t getting information is a way that can help. ‘Common people’ are us – and we can tell researchers how to communicate better with us.”
“Language is biggest thing that separates people. It’s people like us who read the information and don’t understand what’s being explained. For folks to use us to help communicate is beautiful; it’s the strength of the CARDS.”
Personal Impact for CARDS
“Being in the CARDS makes me feel wanted, like I’m part of something, feel appreciated.”
“I like being able to voice my opinion and not be criticized or told I’m wrong.”
“The topics often affect us or people we know; most of us have been affected with the health issues involved or have family members who have been affected.”
Feedback from Community Partners on WINRS Expertise
“The WINRS team are the perfect ambassadors between the worlds of research and the grassroots community. They create spaces and processes where people can really communicate across barriers that often divide us.” -- Paul Terranova, Executive Director, Lussier Community Education Center
“WINRS staff are highly professional, creative, and knowledgeable. They are excellent trainers who have the ability to put everyone around them at ease with their warm and friendly demeanor. I have participated in the training for CARDS and observed how, even when topics are complicated and potentially confusing, they find creative ways to fully engage the participants”. -- Deenah Givens, Asset-Based Community Development Coordinator, Goodman Community Center
Contact for More Information
For more information, please contact:
Learn more about WINRS on their website: http://winrs.son.wisc.edu/
WINRS is a partnership between the University of Wisconsin-Madison School of Nursing and two Madison community centers, the Goodman Community Center and the Lussier Community Education Center. WINRS co-directors are Gay Thomas, MA, and Betty Kaiser, PhD, RN. WINRS was established with support from an NIH program grant Building Sustainable Community-Linked Infrastructure to Enable Health Science Research (RC4NR012372) and by the UW-Madison Institute for Clinical and Translational Research (CTSA program through NCATS, grant 9U54TR000021).