We close out our fiscal year with a portfolio of nearly $1.6 billion in CER and related projects, 551 in all. As you'll see in the graphic on the right, about three-quarters of these compare different care approaches in an effort to help patients, those who care for them, and those who pay the bills make better-informed healthcare decisions. The rest of the projects are either developing improved methods for conducting patient-centered CER or building and enhancing the infrastructure needed to carry out this research faster and more efficiently.
Over the past year, we have continued our stakeholder-guided shift to funding larger studies of specific conditions that impose a substantial burden on patients, their families, and the healthcare system—and on specific comparative questions within these areas. Fully two-thirds of our funding went to such projects in 2016. I mention some exciting examples below. And we have more examples than ever before of how PCORI's commitment to engaging patients and other stakeholders in research—as a way to generate more-relevant and useful research—is influencing others to take a similar approach.
Continuing to Focus
This past fiscal year, we continued to focus more attention—and funding—on larger targeted studies of critical patient-centered research questions that our stakeholder community told us were important to them. The studies approved for funding included comparisons of drugs, medical procedures, and other approaches to disease prevention, diagnosis, and treatment. Two-thirds of the funding we approved in 2016 went to such projects, bringing our cumulative investment in targeted studies to almost 50 percent of our total research investment to date. We expect these proportions will continue to increase.
Among these targeted awards were studies comparing various pharmaceutical and surgical approaches for treatment of multiple sclerosis, treatment-resistant depression, and low-back pain; projects asking how to best use opioids in managing chronic pain; a large study comparing approaches for breast cancer screening: and a large trial comparing the effectiveness of two new and one older blood-thinning agents for preventing recurrence of dangerous blood clots in the lungs and veins.
An Exciting Time for PCORnet
We’re especially excited to see the progress being made by PCORnet, the National Patient-Centered Clinical Research Network, in harnessing large-scale health data and stakeholder partnerships to boost the pace and power of health research at lower cost than was previously possible.
Now, in PCORnet’s second phase of its development, the partner networks are engaged in projects that develop and test their capacity to conduct large-scale research. With 33 partner networks based in both large healthcare systems and patient-focused groups, PCORnet has access to protected, standardized data from more than 130 health systems and patient groups. Researchers can run queries against health records and other data from as many as 145 million individuals. More than 20 clinical trials and observational studies are already under way, including PCORI-funded studies on preventing heart attacks and strokes in people with heart disease and improving obesity prevention and treatment, as well as trials funded by the National Institutes of Health, the Centers for Disease Control and Prevention, and the Agency for Healthcare Research and Quality. By spring 2017, we expect PCORnet to be ready to consider outside teams’ requests to access the data network for a wide range of important patient-centered studies.
Peer-Reviewing and Sharing Research Results
This past year, we began implementing our process for peer-reviewing our primary research and releasing summaries of results that patients, clinicians, and the public can use to make better-informed healthcare decisions. The first of those summaries from our earliest-funded CER studies should appear on our website in early 2017, although we’ll post summaries of initial PCORI Pilot Projects sooner.
Peer review is required by our authorizing law, but we fully embrace it as a natural expression of how seriously we take our name and mission. Our peer reviewers will include not just scientists, statisticians, and methodology experts but also patients and other healthcare stakeholders. The goal is to assess not just the scientific integrity of the projects we support and their adherence to PCORI’s Methodology Standards, but how well they performed on measures of patient-centeredness and engagement, as well as how useful they can be to patients and others in the real world.
We moved ahead this past year on two other fronts related to the open science movement, which seeks to make research results more widely available to everyone with an interest in them. First, we began requiring our awardees to deposit study-related manuscripts accepted for publication by journals in the federal PubMed Central database. PubMed Central makes those papers freely available, typically within 12 months. We expect the flow of such papers to increase dramatically in the next year and beyond. Second, we agreed to cover the fees that many journals charge for free real-time public access to selected published papers. We are also nearing completion of a draft policy on access to, and sharing of, data from our funded studies. We plan to seek public comment on that draft policy soon.
All of this is part of our commitment to disseminating the results of our funded projects as broadly and rapidly as we can and in ways that all of our stakeholder audiences will find useful.
We fully embrace [the peer review process] as a natural expression of how seriously we take our name and mission.
Changing the Conversation and the Culture of Research
We’re pleased to see growing evidence that our work is changing the conversation about how health research is conducted in the United States—and in the process, having an impact on the culture of research itself. Healthcare institutions, academic centers, funders, policy makers, and industry are increasingly seeking to engage patients and others in the healthcare community in their work. I mentioned several examples in a blog post a few months back, and the list has grown since then.
We don’t claim to have started this movement but do think we can take some credit for its quickening pace and broadening impact. We share the belief that this approach makes it more likely that research will focus on the issues and outcomes most important to patients and other stakeholders, yielding results more relevant to those who need them and more likely to be taken up in practice.
In fact, “Changing the Conversation about Health Research” is the theme of PCORI’s fast-approaching second Annual Meeting, to be held in mid-November. It provides an opportunity for people across the healthcare community to come together to hear from national thought leaders, researchers, patients, family caregivers, clinicians, and others about key trends in patient-centered research and improving dissemination and uptake of important research results. We invite you to join us.
We’re proud of what we’ve achieved so far as the nation’s major funder of CER. We make more progress every day in meeting the challenge Congress set for us when it created PCORI in 2010: to use patient-centeredness and stakeholder engagement as the guiding principles in our work to ensure that CER findings are essential and widely used in clinical decision making. As we enter our seventh year, we’re optimistic that we’re well on the way to making that a reality. As always, we welcome your thoughts on how we’re doing.