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ADAPTABLE patient partner, Greg Merritt, shares his perspective on the value patients bring to clinical research and how patients and researchers can work together in research and treatment.
“When people are invited to get involved with research and bring all their experiences, we can study a question from a truly collaborative perspective, creating a culture of curiosity, and the prospect of innovation. The mantra here is strength in our differences!”
Why is patient-centered research important?
The biggest value of patient-centered research is incorporating patients! This may sound obvious as patients are uniquely qualified to understand why the research matters. When researchers work long hours, they have the option to go home and turn off thinking about the disease under study. However, patients never get to turn off thinking about or living with their disease. Patients go to bed with and wake up with their condition. When answers to research questions are positive or can lead to a significant improvement in quality of life, it makes sense that patients should be meaningfully involved in the research from the beginning.
At a recent research meeting, hosted by Health eHeart Alliance, I saw first hand the value of having patients in the room discussing and prioritizing research questions. Knowing what questions to ask is key and patients should be part of this prioritization process, especially when resources and funding are limited.
In the case of ADAPTABLE, at least for me, I have taken aspirin as a preventative measure for approximately 16 years. If you asked me if I knew what aspirin did, beyond preventing a heart attack, I would not be able to tell you. If you asked me why I was on the dose I was or why that dose was right, I would not be able to tell you that either. When talking about ADAPTABLE and the aspirin dose question to other heart patients, I often hear, “We should figure this out!” It is great that ADAPTABLE will help answer what dose is right for heart patients and includes these patients in the design of the question and study.
How can patients and researchers work together as partners in research and treatment?
Patient involvement needs to be welcomed and wanted. Healthcare researchers and practitioners need to see this as an opportunity not an inconvenience. In research, patients wear two hats. The first hat is their “patient hat:” I am here for treatment or involved in a research project because I have a stake in what happens. I will either get better or worse or the research question asked could improve my life or my family’s down the line. The second hat patients wear is their “life experience” hat. In wearing this hat, patients draw on experiences from their professional field, education, health history, etc. Researchers can embrace these different perspectives that patients bring and look at the same problem or question with a new lens.
It is incredibly important to give value to the experience of partnering with patients in research. Researchers may be surprised by patient input and stumble upon innovation! When people are invited to get involved with research and bring all their experiences, we can study a question from a truly collaborative perspective, creating a culture of curiosity, and the prospect of innovation. The mantra here is strength in our differences!