Basch: Patient participation must play a larger role in research

Patients must take a larger role in participating in and assisting in determining priorities for medical research, according to an editorial published in an upcoming issue of the Journal of the American Medical Association.

In the editorial published online May 10, co-authors Ethan Basch, MD, MSc, director of the Cancer Outcomes Research Program at University of North Carolina Lineberger Comprehensive Cancer Center, and Mary Tinetti, MD, Gladys Phillips Crofoot Professor of Medicine and Epidemiology and Public Health at Yale University, outline the need for medical researchers to break down the barriers between researchers and clinical practice in order to better communicate with patients about their needs and priorities during treatment.

“Patient-centered care is not possible without patients and their caregivers playing a central role in care decisions, and, importantly, in the research that informs those decisions,” the authors write.

The priorities of researchers when evaluating new therapies, especially for patients with chronic conditions, must take into account how potential side effects and complications will impact both a patient’s health and willingness to continue treatment. Using the example of the disconnect between a diabetes researcher who focuses on the ability of a therapy to regulate hemoglobin levels against the needs of a patient who worries about how to balance the therapy’s side effects with life issues such as depression and unemployment, the authors write that the practical realities of a patients’ life must be taken into consideration when evaluating potential benefits and side effects of care.

“The millions of individuals with chronic conditions such as diabetes have different perspectives on what is most important to them. These varied perspectives must inform the research if the research is to inform decision making,” write the authors.

In order to accomplish this shift, researchers must make greater use of tools to facilitate communication between patients and researchers. Online portals, pen-and-paper questionnaires, integration of patient-reported outcomes into digital medical records and other tools should be used to give researchers access to data that can inform their evaluation of new therapies.

“Although some individuals are concerned about these blurred boundaries and hesitant about expecting patients to be involved in research, it is worth considering that clinicians implicitly experiment every time a diagnostic test or treatment is ordered that was evaluated in individuals who differ from the patient in personal characteristics, disease severity and manifestations, overall health, or health priorities,” write the authors.

Date: May 13, 2013

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