The Importance of Patient-Centered Research
At the most recent American College of Rheumatology annual meeting, a session was convened to discuss the importance of including the patient’s voice in the development of healthcare. The presentations on this topic were given by individuals who know the power of patients firsthand – professionals in the fields of research and patient services who have themselves grown up with rheumatic diseases.
Dr. Jennifer Horonjeff presented on the importance of patient perspectives when it comes to healthcare research. Diagnosed with juvenile idiopathic arthritis (JIA) at only 11 months old, Dr. Horonjeff still went on to become a professional dancer. She then attended graduate school to help people living with pain learn to do the things they want to do. Today she works as a consultant in ergonomics, biomechanics, and patient-centered care, using both her professional perspective as a researcher and her personal experience growing up with JIA to help her clients.
Although traditional medical research has produced remarkable advances in healthcare, it hasn’t been able to answer many of the questions that patients and their clinicians face on a daily basis. And, even if reliable information on these topics does exist, this information is not always made accessible to patients. Dr. Horonjeff’s presentation was primarily addressed to clinicians and researchers, to educate them on ways to engage patients as partners in research.
Dr. Horonjeff emphasized the importance of patient-centered research, where the care experience is viewed through the eyes of the patients and their support groups. In other words, researchers work to focus on research outcomes that are actually important to patients and address their real concerns, such as quality of life.
Researchers in the audience were encouraged to consider patients as equal partners on the research team. While patients may not have the academic qualifications or knowledge that researchers have, they do have another type of qualification – patients are the experts on being patients. And since the patient’s perspective can be such a valuable part of research, Dr. Horonjeff also recommended that patients who take the time to participate in research should be funded. She reminded the audience that patients have their own lives and expenses and that their time and effort should be appropriately valued. Lastly, Dr. Horonjeff emphasized the importance of sharing the results of research with the patients, as valued members of the research team.
After the presentation, I spoke a bit with Dr. Horonjeff about her perspective as a patient, rather than a researcher. Her primary message to patients was that your voice is powerful and you can make a big difference in the way research proceeds. She recognized that it can be overwhelming as a patient to try and step into the world of research, because you may not understand the complex dynamics of how research is developed. However, though it may feel a bit scary to get involved, she stressed that if patients don’t speak up we may miss valuable opportunities to share our experiences and make a profound impact on research.
Today, more and more professionals are recognizing the valuable impact of the patient voice. Consequently there are a variety of levels where patients can get involved in research to advocate for themselves and others – and these opportunities continue to grow. If you are interested in learning more about how you can get involved with research as a patient, please visit the Patient-Centered Outcomes Research Institute.
This activity is not sanctioned by, nor a part of, the American College of Rheumatology.
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