Every day, patients and those who care for them must make important decisions about their health care. There are many options to choose from, and too often we do not have reliable information to make good decisions.
Getting the community more engaged in health research is the key to producing information patients can trust and use to make more informed decisions. This kind of research is called patient-centered outcomes research. It is long overdue and has the ability to transform health care because it is focused on the needs and perspectives of patients and stakeholders.
I recently returned from Washington, D.C., where I participated in an activity with other researchers, patients and providers and care givers to determine how best to prioritize what research questions are most important to improve patient-centered outcomes.
The Patient-Centered Outcomes Research Institute is an organization developed through the Patient Protection and Affordable Care Act in 2010. It conducts research to give patients a better understanding of the prevention, treatment and care options available and the science behind these options.
At the workshop, I learned about a new PCORI project to collect questions from patients and the health care community to determine what research topics it will study. They need to hear from people like you and me and about the decisions we might face.
Sometimes what is important to us is not the same as what researchers ask about. For example, I was part of a research group that studied the effectiveness of ways to train the breathing muscles of patients with emphysema and chronic bronchitis. We tested an exercise device that patients breathed through to see if their breathing muscles developed more endurance.
While this effect was important to know if the device worked or not, we also evaluated if the training helped patients walk farther or do more before they felt short of breath. We assumed the “patient-centered” part of the research was about whether the training helped patients do common daily activities like getting dressed, walking to the mailbox or what ever was important to them.
It’s time for us as a community to become active participants in health care. This starts with identifying the questions we need answered.