I have had epilepsy since I was fifteen. Back in the 1950s many people—my parents included— believed that my “fits” were caused by a spiritual force. Growing up with this neurological disorder and dealing with the misinformation surrounding its causes and treatment was difficult. My disability also got me kicked out of seminary. Fortunately, since then, the world has changed for the better for those of us with disabilities.
It wasn’t until I was a young adult that I received a proper diagnosis. The experience of coping with something I couldn’t fully understand or control, however, continues to shape who I am in my personal and professional life. I am convinced that we patients must work to be well informed about medical conditions and health care options.
“Patient-centeredness” also motivates my ongoing involvement in comparative effectiveness research (CER).
By definition, CER is the system of comparing various medical treatments to see which works best on different populations. The goal is to provide patients and their physicians with evidence-based information to make proper and effective medical decisions.
In the past, decisions on research priorities and the communications and use of results of comparative treatments were made by academic researchers and their respective federal research agencies with very little patient and physician input. The primary goal—perceived or real—seemed to be cost-savings.
Last March, however, the Affordable Care Act ushered in a new era for patients and comparative effectiveness research. The new healthcare reform law created a non-profit institute, the Patient-Centered Outcomes Research Institute (PCORI), which will provide the most important stakeholder in healthcare—patients—with a key role in the effort to fill gaps in evidence and identify the most effective treatments.
Moving forward, CER must be done in a way that values the diversity of patients, including various ethnic, racial, and disabled populations.
There is no doubt that the Affordable Care Act provides a thoughtful approach to patient-centered health care management. Still, there’s plenty of concern surrounding the new CER mandate. As comparative effectiveness research rarely provides a “one-size-fits-all” answer about what course of treatment is best for all patients, decisions made by the board must not interfere with a doctor’s ability to practice medicine. Similarly, while costs are important, they must not be the main tool to limit patients’ and providers’ choices.
We have time to act to ensure a robust CER system. In order to put patients and providers first, any CER proposal must value health outcomes and medical advances over cost-savings as a primary motivation. While CER can also form the basis for additional dialogue about how to control health care costs, we must avoid oversimplified rationing of patient care.
We must also design studies that reflect America’s racial and ethnic diversity and find innovative ways to communicate with diverse groups on public health issues. This includes targeted therapies that benefit specific groups of patients with rare and orphan diseases.
There is no doubt that the Affordable Care Act provides a thoughtful approach to patient-centered health care management and we must do our best to ensure patient-centeredness is achieved through objectivity, integrity, respect for patient differences, and an appreciation for its limitations.