Network Association: Chicago Area Patient-Centered Outcomes Research Network (CAPriCORN)
I am from a small family. My life drastically changed when the principal people in my life died. First my mother passed away, then not too long after, my husband passed. There was no preparation for that. We prepare for everything but not this kind of life adjustment. I floundered for a while and then started having high blood pressure and anxiety. Despite a lot of medication changes, I had trouble controlling my blood pressure. My personal health experiences have put me in a place of better relaying and helping physicians understand the patient perspective in health care.
How did you get involved in ADAPTABLE?
I was invited to participate in ADAPTABLE by my cardiologist and primary care physician. I did not have previous research experience but I have been an active volunteer in the community working with students and as an alderman. I have also dabbled in a number of professional experiences. I have been a benefits manager for seven years and a personnel manager for 20 years. All of these experiences have something to do with who I am today. I know a little bit about a lot of things but not a lot about one thing
I believe the patient perspective is important to help change the perception of clinical research. In underserved communities, people continue to have a negative perception of clinical research where patients are treated like laboratory animals.
My experience with ADAPTABLE has been very positive. I hope that when other patients hear about the work we are doing in ADAPTABLE, they will have a better understanding of the value of clinical research and the role patients can have in research. I hope that people will feel empowered to take action by asking their physicians about their research and how they can be involved and how they can provide the patient voice.
What do you enjoy most from your involvement in the ADAPTABLE study?
Adaptable puts me back in the midst of things that matter. Things that matter to me and that matter to others. It is an opportunity to help someone who may be hesitant or not know what the right dose of aspirin is for them. If I can help someone learn about what is good for them then I am happy to help. ADAPTABLE is a combination of things I like: to help others and to learn.
What do you do now to take care of your heart health?
This is a good question. It depends on which doctor you speak to on what day! At my age, I realize there is always something else I could do. I will most likely not do all that I am supposed to in a given time. My focus right now is to lose weight. I have had some good moments when my blood pressure has been great for months; then one day it will spiral out of control. I do not know how to explain this and why it happens this way. I worry a lot about things and maybe it is anxiety. For my heart, I try to stay busy and I try to only do things that bring me joy.