Health care chiefs weigh the impact of patient-powered research

It only makes sense for health researchers to study questions that most matter to patients, right? Questions like:

• What options do I have for treating my condition?
• What are the benefits and harms of each option?
• Given my situation, which choice gives me the best chance for better health?

Yet these kinds of questions seldom drive scientific inquiry. Too often, research agendas are set by other motives, such as the scientists’ academic interests or the potential for profits or other market gains. And too often, research is conducted in experimental settings that don’t reflect patients’ actual experience of health and health care.

But changes are afoot, thanks to support for the Patient Centered Outcomes Research Institute (PCORI), a nonprofit organization established by the Affordable Care Act. PCORI funds research comparing the effectiveness of various treatments to discover the evidence that patients and their caregivers need to make better-informed health care decisions. This type of research is squarely in Group Health research’s wheelhouse because it relies on clinical data gathered in real time from actual health care settings. Our researchers have longstanding collaborative relationships with Group Health providers and patients and access to the organization’s electronic health records. And we participate in large networks of similar research institutions—all of which makes Group Health Research Institute (GHRI) well suited to this new era of patient-powered science.

I recently had the opportunity to help lead two workshops for health system leaders interested in integrating research into real-world health care settings. Sponsored by the Institute of Medicine’s Roundtable on Value & Science Driven Health Care and PCORI, the workshops highlighted patient-powered research that’s already resulting in better care at a lower cost for patients. Jonathan Perlin, MD, PhD, chief medical officer at Hospital Corporation of America (HCA), described his organization’s recent efforts to fight methicillin-resistant Staphylococcus aureus (MRSA). This dangerous, drug-resistant infection has plagued many health care facilities.

Collaborating with scientists from several research organizations, HCA providers conducted a pragmatic clinical trial comparing three different approaches to preventing MRSA in 43 HCA-based intensive care units. They showed that one prevention strategy outperformed others at reducing infection rates. It also demonstrated how embedding such research into a routine care-delivery system provides information that can make a direct, positive impact on its patients.

In another session, Group Health President and CEO Scott Armstrong joined a panel of other health care chiefs to discuss the infrastructure needed to support such efforts. Integrating research into real-world clinical settings has both pluses and minuses, they concluded—an assessment echoed in a survey led by GHRI Research Associate Karin Johnson, PhD. Her preliminary results showed health care leaders believe integrating research with clinical care:

• can interfere with operations—especially when it’s “out of sync” with fast-paced changes in the delivery system;
• may require new ways of using data—focused on generating knowledge in addition to improving outcomes; and
• typically involves culture change as researchers and health care providers learn to adapt to each others’ perspectives in the unpredictable world of everyday clinical care.

But they believe it has many positive impacts as well, in that it:

• advances their organizations’ missions and strategies;
• supports operations in ways such as facilitating process improvement; and
• improves patient care.

With improved care as a primary goal for both research and care delivery, Group Health remains committed to its collaborations in patient-powered research. GHRI researchers now have six PCORI-funded studies underway and keep seeking funding for future projects. Current topics include helping patients get the care they need for back pain, improving outcomes for asthma patients who are racial minorities, and comparing MRI to mammography among women who have survived breast cancer. GHRI is also helping to launch PCORnet, a large group of health care information networks that PCORI funds to advance the use of electronic health data for comparative effectiveness research.

While this activity shows that patient-powered research is alive and well at Group Health, our teams must also recognize that federal funding for PCORI could be in jeopardy following the 2016 national election. If we believe in our approach—research based on data from real people getting care in real-world clinical settings—then we must do our very best work now, proving the value of our work and building a strong case for continued support of PCORI in the years ahead.

—Eric B. Larson, MD, MPH
Vice President for Research, Group Health
Executive Director, Group Health Research Institute