This month, the “Take Charge of Your Health Today” page focuses on research and why equity in research participation is important. Jennifer R. Jones, MPH, CTSI community engagement senior coordinator, and Esther L. Bush, president and CEO of the Urban League of Greater Pittsburgh, shared ideas on this topic.
JJ: Good afternoon, Ms. Bush. I hope your October has started well. I’m really glad that we can spend some time today talking about research and health equity—what it is, what ethics are involved in research and, especially, how important it is that current research is representative of all definitions of diversity.
EB: Yes, Jennifer. I am so passionate about this topic. The Urban League of Greater Pittsburgh has been partnering with CTSI for more than 10 years now. In that time, I’ve learned so much from CTSI leaders like Dr. Steve Reis and my friend Dr. Elizabeth Miller. I’m extremely proud of the mutual trust and respect our organizations have built. I look forward to what we’ll continue to do together. I’m proud to say that our Urban League supports research and research participation and that we all work together to create a “research-informed community.”
JJ: Let’s talk about that for a minute. That’s the main part of our mission and work together. What does a “research-informed community” mean to you?
EB: To me, it means that all of our communities understand what health research done well looks like—that our communities understand the rigorous process that researchers must follow to ensure that risks are minimized for participants. It means that our communities are empowered to ask questions about research they may be interested in and to listen thoughtfully to learn how research has progressed over the years.
JJ: I do many talks in the community about research. CTSI participates in health events across the city to talk about Pitt+Me, our CTSI research registry. We want community members to ask us questions and to know that research is always voluntary. We want people to understand the process of informed consent—to identify where to go to find studies that may be beneficial for them or their families. People also need to recognize that African Americans are underrepresented in health data.
EB: Underrepresentation is something I know we can improve. Historically, African Americans, and other underrepresented groups, have had good reasons not to want to participate in medical research. But it’s important to me that more than white men are represented in health research data. I want Black folks, women, children, the elderly and the disabled—all vulnerable groups—to be represented in research. Only then will those who treat us truly know they are providing the best possible care for each of us.
JJ: Providing the best possible care for each person is what we call “precision medicine,” which is our November health topic. We’ll explore all those points in greater detail in just a few weeks. Thank you for your openness and honesty, Ms. Bush. I always appreciate your time.
If anyone has questions or would like more information about the topics on this month’s page, e-mail partners@hs.pitt.edu.
The Urban League of Greater Pittsburgh health education office staff members are also available to answer questions about research and to let community members know what research opportunities may be available. We’re all more than happy to answer your questions.
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