What do patients really want? PCORI-funded research raises the bar

Climatologists aren’t the only ones predicting hotter temperatures this summer. The heat is also likely to rise in the nation’s ongoing debate over health care reform and what patients need from the system. Sources likely will include the presidential and general election din, along with responses to the U.S. Supreme Court’s ruling on the Affordable Care Act’s controversial mandated coverage—due out later this month. Meanwhile, a recent Health Care Cost Institute study shows U.S. health care costs keep rising, despite declining utilization. This fuels concerns that health care is dragging down our sputtering economy—and shows that rationing may already be happening, based on how much patients and insurers pay.

Some may stoke the debate with fears of “death panels” and government interference in individuals’ health care decisions. Some will point fingers at providers and drug and insurance companies, blaming them for bloating costs through excessive profits. The New York Times’ Jane Brody captured the mood last week, citing studies that show 30 percent of medical expense goes to “wasteful tests and procedures, unlikely to benefit anyone except those whose pockets are lined as a result. Unless this waste is cured, rationing will almost certainly become a reality in the not-too-distant future.”

Still there’s cause for optimism, especially among those working quietly to apply less heat and more light to the issues at hand. Here at Group Health Research Institute (GHRI)—and other similar research organizations across the United States—scientists are busy preparing proposals for the Patient-Centered Outcomes Research Institute (PCORI), a federally funded nonprofit organization that the Affordable Care Act established to focus on comparative effectiveness research. This research explores how treatments work compared to all others available for a given condition. While PCORI doesn’t address cost directly, many hope its work will cut health care costs by giving all stakeholders a better understanding of the science supporting the available options for prevention, treatment, and care.

One of the most exciting aspects of the PCORI application process is its emphasis on engaging patients in all phases of each research project. While organizations such as GHRI have long included members on advisory boards and encouraged patient involvement in research oversight, PCORI grants require that scientists take this involvement further: As research teams formulate their scientific processes, they must include patients who are representative of the populations they are studying. And ongoing patient involvement in oversight and dissemination of research is also expected.

For instance, a patient with diabetes will be a key stakeholder in research exploring new approaches to treating diabetes. The patient will help the scientists hone their study questions, choose research methods, monitor the project’s progress, and disseminate results. The intention is to design care that focuses on the outcomes that patients value most. Ultimately, PCORI believes patients will make better choices based on research that addresses patients’ concerns, not just what researchers are interested in.

While competition for PCORI grant dollars is high, many of us at GHRI are excited about the opportunity it is providing for patients nationwide. Such engagement and transparency are like the accountability Group Health Cooperative founders instilled in our organization as one of the nation’s few consumer-governed health care cooperatives. Since 1947, Group Health has supported a robust infrastructure for involving members in decisions that affect patient care and coverage. Hundreds of patients serve the organization in meaningful roles including resource line volunteers and leaders of online patient support groups. Group Health members serve on advisory committees that evaluate medical technologies, review the pharmacy formulary for cost and quality outcomes, and recommend insurance benefits. Members also serve on the Group Health Research Advisory Board and as ad hoc advisors to specific GHRI research projects. Examples include projects to develop, test, and evaluate new approaches to chronic illness care, and to develop and evaluate Group Health’s medical home and integrated care facility design.

Of course, we’ve always tried to center research and care on patients. But now, in preparing our applications to PCORI, we have a chance to think more deeply about including patients systematically in every aspect of our research. Our efforts may or may not result in instant success in grant dollars awarded, but the work is raising valuable questions about what matters to patients. And that’s bound to build needed trust and accountability as we face tighter resources ahead.

—Eric