Patients need a health system that helps them make informed decisions

For patients and their loved ones, navigating the U.S. health-care system can be a complex and daunting experience that often is made worse by the anxiety that accompanies a life-threatening illness or injury.

But the vulnerabilities of patients and their families aren’t the only problem. Because the system often relegates them to a passive role, doctors and researchers are denied the valuable insights an equal partnership might provide.

The Patient-Centered Outcomes Research Institute (PCORI) has been making great strides in accelerating the adoption of a more patient-focused health-care system. Unfortunately for patients, their families and caregivers, funding for this critically important organization runs out at the end of this year, putting at risk the tangible progress we have seen in many areas over the last decade. As Congress considers a slate of funding proposals in the coming months, the reauthorization of this critical program must be front-and-center. 

Why is PCORI critical to building the health-care system of the future?

First, PCORI’s research provides data useful to patients and other health-care stakeholders, putting them in greater control and giving them a critical voice in their care. Created by Congress in 2010 as a nongovernmental, nonprofit, organization, PCORI helps patients answer the critical question, “what’s the best treatment for someone like me?” 

One study challenged the common hospital practice of automatically admitting patients with chest pain even if initial tests show they had not had a heart attack. In the study, patients whose initial tests were negative were given information about their condition and allowed to choose whether to remain in the hospital for additional tests or go home and have the additional tests done later. The study resulted in 15 percent fewer hospitalizations with no adverse effects on the patients — meaning people were able to safely stay at home with their families rather than spend costly days in the hospital.

Next, PCORI is fundamentally changing how research is done by ensuring that patients are engaged throughout the process so that research answers the questions patients care about most. PCORI works closely with a wide variety of health-care stakeholders, including patients and caregivers, scientists, providers and insurers, to guide its research. Patients sit on committees that select research projects, monitor the projects, and participate in outreach to share the results with health-care professionals.

PCORI has demonstrated that by engaging patients throughout the research process, researchers are more likely to ask the right questions, study the outcomes that matter most to patients, and produce results more likely to be used by patients.

Finally, PCORI is shifting the culture of medical research. Most researchers — whether they are working in basic research, drug or device development, value assessment, quality measurement, or delivery-system design — now view patient involvement as a requirement. 

The Food and Drug Administration recently established a patient-engagement advisory committee for medical products and well-defined procedures for incorporating patient viewpoints. By making patients partners in research, PCORI is infusing the entire health ecosystem with a culture of patient engagement.

In its first decade, PCORI has changed the system for the better. Reauthorization will ensure continued progress toward a health-care system that enables patients to make more informed decisions and achieve the outcomes most meaningful to them. 

Tanisha Carino, Ph.D. is the executive director of the FasterCures, a Washington-based center of the Milken Institute. Marc M. Boutin J.D., is the chief executive officer of the National Health Council.