Written by Kym Radford, outreach coordinator for the REACH Initiative at the Institute for Clinical & Translational Sciences/Center for Community Health Partnership & Research at the Institute for Public Health
Research matters to me. In the late 2000s, a study conducted at Washington University was instrumental in the early detection and confirmation of Alzheimer’s disease—a disease my mother lived with until she passed away in 2015.
Without this research, my sisters and I would not have been as successful in developing the best health and safety care plan for her. The everyday decisions about her well being that I made as her full-time caretaker were based in this research knowledge.
I have worked in community and school settings for 20 years, primarily focused in youth and teen programming. Everything I taught had a basis in science—the program materials and approach were being implemented because they had been shown to effectively impact preventive measures and behavior change in youth and teens in other settings.
Research gave my clients the opportunity for optimal health.
This fall, I accepted a position with the Center for Community Health Partnership & Research (CCHPR) that perfectly intertwines my personal understanding of why research matters and professional community engagement experiences. In my role with the REACH initiative of CCHPR, I build and maintain relationships with direct service agencies, food pantries, YMCAs, community collaborative initiatives, libraries, community centers, and other places where people go. The goal of the REACH initiative is to make research relatable and understandable to all of us.
Whether you are a firefighter, cashier, childcare provider, bus driver, teacher, unemployed, retired, or a student, I talk with people like you every day. I want to hear your thoughts about research, if you have any experiences participating in health studies, and what you think should be priorities for research at Washington University. Every conversation is different:
“[I don’t want to participate in research because] I don’t want any drugs in my system.”
I focus on dispelling myths and misconceptions about research through conversation and interactive educational materials. We talk about and review visual examples of different types of studies ranging from online surveys to research-based hospital stays.
Often, people have not had an opportunity to express their feeling on historical wrongdoings, like the Tuskegee Experiment:
“I’m no guinea pig!”
“I signed up for one, but didn’t follow through because the comfort level wasn’t there.”
I serve as that ear, and share information about the rights and protections in place to prevent the recurrence of these ethical violations. I reinforce that you have the right to stop participating in a study at any time, and the choice to participate is always yours.
Other times, people simply don’t know how to get involved—or in what capacity they can get involved:
A college student at Harris Stowe State University expressed interest in learning more about how to get involved in health studies in hopes of helping his diabetic grandmother live longer.
Our “book of research opportunities” can help identify relevant studies for people based on their health interests and needs. If they think they may want to participate, I give them a phone number to call the study coordinator, and ask them to call us back to let us know how their experience went.
Individuals such as this who talk about a lived experience—often as either a caretaker, patient or community leader—have an invaluable and untapped perspective for shaping research priorities, design, and meaningful dissemination of results. If interested, these individuals fill out an application and if the opportunity arises, will be called to participate as community advisors to researchers.
Finally, I hear statements that confirm my belief of why broad presentation in health research matters:
“Through my participation, I learned about healthy eating and risks.”
“I have participated in several studies and believe it has added years to my life due to underlying health issues being revealed throughout the process.”
All of us—regardless of age, gender, race, ethnicity or socioeconomic status—can have a stake in health research. All of us can reach out to make a difference in thousands of lives by learning about and participating in health research.
To learn more or collaborate with the REACH initiative, please call (314) 362-7034 or email communityhealth@wustl.edu.