Getting Specific: PCORI Starts Seeking Ways to Better Address Key Health Topics

Building a national health research institute from the ground up, as we’re doing at PCORI, takes time and patience. People dealing with serious health conditions understandably have little of either when it comes to seeking information to help them make important decisions.

So as we continue to invite and fund patient-centered outcomes research projects under a set of broad priority areas announced last year, we’ve now started issuing what we expect will be a series of funding announcements focused on specific high-impact health topics. Some announcements will address questions within a specific illness; others will be cross-cutting. With each announcement, we aim to concentrate resources and accelerate progress toward definitive, useable information for patients and those who care for them as they face specific questions.

Our strategy for our first efforts in focused areas is to build on the existing work of several respected health organizations that had prioritized important unanswered research questions. This helped us identify five specific topics where critical knowledge gaps currently affect large numbers of patients. We then refined the research questions and considered different approaches by forming multi-stakeholder workgroups that brought the healthcare community’s perspective to each topic.

Our first "targeted" funding announcements

Our progress has been evident over the last week. We’ve announced funding for two of the five targeted topics and received approval from our Board of Governors to solicit applications for a third. Combined, the three will fund up to $67 million in patient-centered outcomes research.

On June 14, we announced funding of the first of the three topics – preventing injuries from falls in older adults. Our plan includes a partnership with the National Institute on Aging (NIA) of the National Institutes of Health (NIH) to fund a major intervention study aimed at addressing this problem. We expect to commit up to $30 million to this effort, called the Falls Injuries Prevention Partnership, and expect to issue a funding announcement later in the year.

For many older adults, an injury from falling can mean the loss of independence or more serious consequences. We are creating the partnership with NIA to produce trustworthy information that will help patients, caregivers, and clinicians develop successful strategies to prevent these injuries.

On June 18, we issued a call for research proposals to study methods to treat uncontrolled asthma among African Americans and Hispanics/Latinos in the United States. Nearly 26 million Americans are affected by asthma, but racial and ethnic minorities suffer at disproportionately high rates.

Numerous studies, and our own engagement work, confirm that asthma care must be tailored to specific populations and communities to achieve greatest success. Current treatment approaches are not working well for African Americans and Hispanics/Latinos—African-American children are three times as likely, and Hispanic/Latino children are almost twice as likely, as white children to seek asthma care in emergency departments and to have an asthma-related hospital stay. So, we’re dedicating up to $17 million to fund well-conceived studies to answer the historic and vexing questions about disparities in asthma control and determine how to close the gap.

The same day that we issued the asthma funding call, our Board gave us the go-ahead to pursue a third topic we are targeting – uterine fibroids. Working in collaboration with the Agency for Healthcare Research and Quality (AHRQ), we plan to fund approximately $20 million in studies to address the shortage of information that compares the effectiveness of several therapies for this common condition. We plan to place a special emphasis on uterine-sparing treatments for women who wish to conceive and bear children.

Although there have been many studies of uterine fibroids, difficulties in enrolling patients in randomized studies has led to small sample sizes, limiting the reliability of the findings. Through our partnership with AHRQ, we plan to create a national registry of patients with uterine fibroids, an effort that will support high-quality observational studies and give patients and those who care for them more reliable evidence about the most effective treatment methods.

Partnering to advance patient-centered research

Our planned partnership with AHRQ, along with the agreement we announced with NIA, demonstrates our interest in collaborating with organizations that currently have infrastructure that can be quickly and effectively leveraged to oversee large research studies.

The legislation authorizing our establishment names AHRQ and NIH as preferred recipients of contracts to manage research when a topic is consistent with their mission. So it is fitting that these institutions will be our first formal research partners. We believe that adding the expertise and resources of other research organizations to our multi-stakeholder, patient-centered approach to identifying and studying critical healthcare topics is a recipe for rigorous research that will be responsive to patients’ needs.

We ultimately measure our success by how our research findings are implemented to support better-informed decision making by patients and those who care for them. Using this metric, our new targeted funding announcements have the potential to be highly effective.

The three topics we have now targeted for funding bring with them difficult questions that patients face every day. The partners we have selected to help conduct this research will work with us to seek reliable answers to those questions — evidence that we hope will lead to changes in practice and, eventually, better outcomes.

We look forward to announcing funding later this year for additional prioritized research topics as we continue to develop a robust portfolio of patient-centered research.