The Sentinel Surveillance to Monitor Progress toward Health Equity project aims to develop and implement a surveillance system to capture the information necessary to monitor progress towards health equity for health disparate populations. One key element of this project is the engagement of community members through a Community Advisory Board (CAB). Recently, Mr. John Jones, a member of the Trinity Gardens community and a member of the CAB, shared a little about his experiences with the CAB.
Tell us a little bit about yourself and your background.
I was born in Chatom, AL, but moved to Mobile in 1947. I first moved to Trinity Gardens in 1949. After high school, I spent four years in the Air Force. Living in South Dakota, I attended the School of Mines in Rapid City. After leaving the Air Force, I returned to Trinity Gardens, graduated from Bishop State. I spent the next 28 years working for the railroad. I’m now retired and have time to do more in the community.
How did you become involved with the Community Advisory Board for the Sentinel Surveillance Project?
My pastor, Rev. Ulmer Marshall at Trinity Lutheran Church, was involved with the group. He had to step back from the commitment and asked me if I would attend in his place. I came to check it out. I wanted to see if it was something that I could really contribute to. I thought it was worthwhile so became a part of the group.
Why did you decide to become part of the CAB?
I wanted to share my life experience with the community and with the CAB. If I could contribute to something that would help someone improve their health, I wanted to do that.
Give us a few highlights of your time as a CAB member. Is there any one memory that stands out?
I would say the surveys that were taken. Particularly, I was instrumental in going to places and talking with business owners about the project about allowing the team to conduct surveys on their property. They were so congenial and open to helping. I was surprised. They will still ask how things are going and how they can help.
I have learned some things from the areas I’ve been in and the people I’ve talked with. I didn’t realize how many people don’t have insurance and don’t see a doctor until an emergency happens. I guess I saw it but didn’t see it.
What community needs are you most concerned about?
I’m mostly concerned about the lack of medical assistance available in my community. This includes a lack of education on illness, how do avoid different illnesses, and how to manage their disease if they to get sick. The lack of [health] education means people don’t take health seriously.
Over my life, I’ve watched people with diabetes who only had a torso when they were buried. Their limbs had been amputated. Also, people don’t know that they can lead a good life with Diabetes. Many think it is a death sentence. I’m seeing younger and younger people who say they have High Blood Pressure. Being retired, I now have the time to pay more attention to my surroundings.
In a project like this, we can see the problems and how people fall through the cracks. This work allows us to create a catch basin.
How do you see the sentinel surveillance project addressing these issues in the community?
Hopefully, improve the areas where the data has been collected. I like to think this project will address the issues. I have been asked how long are you going to collect data, when are you going to do something. If I didn’t believe in it, I wouldn’t be sitting here.
Have you ever been involved in research before, if so how is this similar or different?
No, I had no research experience before participating in this project.
What have you learned about research through this process?
I’ve learned that people are embarrassed to be honest about their health. I’ve learned that we can’t put people on the defensive when we talk to them about these issues and ask questions. I guess I’ve learned humility. I’ve never been known to have much patience. Now, I can look beyond a “fault” and understand how to help.
I’ve learned that some people can’t help themselves because they don’t know how. This has taught me to reach out and help them on their own terms.
Would you encourage others people in your life to participate in or be a part of leading/shaping research projects as a result of your involvement with Sentinel Surveillance?
Yes, I would but I would be cautious. You have to be careful of people who want to make a big name for themselves and are not really focused on helping the community.