Annual Survey Shows PCORI is Making Progress as a Leader in CER

Patients and those who care for them will always be PCORI’s “true north”—their questions and concerns guide our work, and our ability to help them make better-informed health and healthcare decisions will define our success. But feedback we get from the broader healthcare community is also an important source of direction as we continue to navigate the challenges of building a portfolio of high-quality, useful clinical comparative effectiveness research (CER).

The National Pharmaceutical Council’s annual survey on CER is an important opportunity to collect some of that feedback. The NPC survey, now in its fourth year, asks more than 100 researchers, policy makers, employers, business groups, insurers, and health plans for their perspective on the research landscape. During an NPC webinar on May 19, I joined an NPC panel to discuss the results and provide insight into PCORI’s role in promoting quality research.

A Recognized Leader in CER

According to the NPC survey, in just three years, PCORI has gone from a supporting role to a key player in many areas of the research enterprise. One of those is setting research priorities.

More than three in four survey respondents view us as the leader among major institutions in setting such priorities for CER. As our investments have grown during our three years of funding research, we’ve had an increased opportunity to influence the scope and nature of studies in this field. We consult our stakeholders regularly to guide our funding priorities and research agenda through our advisory panels, ad hoc workgroups, and other engagement activities.

The NPC survey results also recognize our growing role in supporting an active portfolio of research projects. About three-fourths of those surveyed now view us as a primary funder and monitor of research, a dramatic jump from just 44 percent in 2011. Our role is likely to increase as we seek to award up to $1 billion in research funding over the next two years, accompanied by intensive portfolio management to ensure our investments create returns for patients and those who care for them.

One clear sign of PCORI’s progress as a funder and manager of research: survey respondents perceived our role in this area as equal in importance to that of the National Institutes of Health (NIH) and the Agency for Healthcare Research and Quality (AHRQ). This is a flattering comparison given the scope and quality of research supported by those agencies.

The Emergence of Universal Research Standards

An important piece of PCORI’s broad mandate is to establish generally accepted methods standards for CER and, according to the survey, we are making great strides. The percentage of respondents who felt agreed-upon CER standards are in place rose to nearly 50 percent in this year’s survey, a significant jump from the 27 percent reported three years ago.

The PCORI Methodology Report and its incorporated standards—and the ongoing work of our Methodology Committee—is responsible for much of this progress. Seven in 10 respondents reported that PCORI has a leadership role in setting research standards, and we promote the standards by requiring that PCORI-funded researchers adhere to them in conducting their studies.

We look forward to other research funders adopting the kinds of requirements that we, as well as AHRQ, have developed, so that an increasing share of research will be viewed by clinical decision makers as trustworthy and relevant to their patients’ needs.

Recognizing Challenges

Ensuring that research addresses the practical questions patients face is a challenge the healthcare community has grappled with for years. The NPC survey results show that a fair bit of work remains.

More respondents said current research priorities do not adequately address treatment choices than said that they do, although the difference was much smaller than last year. In addition, large gaps remain in the evidence needed to choose among multiple prevention, diagnosis, or treatment options. Two-thirds of survey respondents said the medical community’s understanding of health options is incomplete, and only 13 percent said the information currently available to patients and those who care for them is adequate.

This finding crystallizes the need for PCORI’s work, and the reality that in doctors’ offices, clinics, and hospitals across the country, patients are consistently faced with health questions for which evidence-based answers are not available.

Our patient-centered approach to filling those information gaps places a priority on studying the practical questions that confront patients. That approach appears to have wide support among healthcare stakeholders. About half of respondents reported that an opportunity exists to use real-world evidence more widely in helping patients make care decisions.

The Next Step for Our Funded Research

As our research portfolio begins to yield findings, we’ll expand our efforts to broadly disseminate that evidence so it can make its way into practice. NPC survey respondents appropriately saw AHRQ as having the lead role in dissemination. As instructed by our authorizing legislation, we’ll be partnering closely with AHRQ to leverage its expertise as we share the information we produce. We’re now developing a blueprint for how that partnership will help patients access the information when and how they need it.

For our staff, Board of Governors, and Methodology Committee, the survey findings were a rewarding reflection of our progress in growing a research institute dedicated to funding patient-centered CER. The results indicate that many healthcare stakeholders view us as a leader across a range of CER.

These results confirm that we’ve taken many of the initial steps to produce the trusted, useful information patients need and create an environment where research can be done more efficiently and effectively. We look forward to continuing our work with all of our stakeholders and future surveys showing that we remain on the right track.