As we close out 2013, let me take a moment to acknowledge the progress made during what has been a defining year for PCORI. And let me thank all of you—our enthusiastic applicants and awardees; dedicated patient, researcher, and other healthcare stakeholder members of our advisory and proposal-review panels; esteemed Board of Governors and Methodology Committee members; and our inspired staff—for participating in this grand adventure. Together, we believe we are demonstrating that we can conduct comparative clinical effectiveness research (CER) in ways that are both different from and that improve on traditional approaches.
PCORI’s mission is clear—to support and promote CER that helps patients and those who care for them make better-informed health and healthcare decisions. We now have a research portfolio in place that significantly advances us toward this goal. The coming year promises to be as busy and exciting as the last, as we dramatically expand and refine this portfolio and begin to see the results from our first funded projects.
A Look Back
I have often referred to 2013 as “our year of strategic investment.” Looking back, that phrase was apt—and not just in terms of research support. By year’s end, our Board had approved some 175 proposed primary research projects and initiatives, across our five National Priorities for Research, totaling more than $350 million. These included projects solicited under both broad investigator-initiated and topic-specific, or targeted, funding announcements. Among the funded projects are studies comparing two or more approaches to preventing, diagnosing, and treating symptoms and conditions, as well as projects that synthesize existing evidence in ways that should let patients and their caregivers make more satisfying, personalized decisions.
We made other investments in 2013 that enhanced and solidified the infrastructure and processes required for us to make good on our pledge of “research done differently.” We invested more than $93 million in 29 projects designed to establish a research infrastructure that will allow our country’s diverse networks of patients, clinicians, delivery systems, and health plans to come together to help realize the vision of a learning healthcare system.
This national network of networks, known as PCORnet, will enhance our country’s capacity to conduct patient-centered CER efficiently by creating a large, representative electronic data infrastructure, based on electronic health records and patient-reported data, with a core commitment to the active participation of patients, clinicians, and systems in conducting useful research.
In addition, we made significant investments to promote true engagement across the healthcare community as a critical means of identifying and funding more meaningful and relevant research.
We have now created six PCORI Advisory Panels, all multi-stakeholder groups dedicated to prioritizing research topics, promoting rigor in our clinical trials and studies of rare diseases, and evaluating and improving our approaches to patient engagement.
To make participation in research accessible to more patients, front-line caregivers, and other stakeholders interested in research but not necessarily part of the traditional research enterprise, we approved our first round of Pipeline to Proposal awards, part of our Eugene Washington PCORI Engagement Awards initiative.
We also released the revised PCORI Methodology Report, which includes the baseline methodology standards that we expect applicants to follow in conducting the patient-centered outcomes research studies we support. And we implemented a number of refinements to our multi-stakeholder proposal-review process, one of the most visible ways we bring different stakeholder voices into the process of selecting proposals for funding.
Overall, it was a year when PCORI turned a major corner, leaving its startup phase behind and taking its place as a national research institute with a distinctive and transparent framework for funding and demonstrating the value of useful, patient-centered CER.
Focusing on the Future
We enter 2014 with a similarly ambitious agenda, guided by our strategic plan, which identifies three overarching goals:
- To substantially increase the quantity, quality, and timeliness of useful, trustworthy information available to support health decisions;
- To speed the implementation and use of patient-centered outcomes research (PCOR) evidence; and
- To influence clinical and healthcare research funded by others to be more patient-centered.
Admittedly, these are no small tasks. We’ll work toward our first goal by sharply ramping up our budget for funding rigorous and useful patient-centered CER. Over the next three years, we expect our annual investments in such projects to average about $500 million. We’re especially excited about a new initiative we’ve announced for funding much larger CER studies than we have supported to date. This effort to fund “pragmatic clinical trials” or “large simple trials” will invite research teams, partnered with stakeholder organizations, to submit their best ideas for studying a set of critical research topics identified by stakeholders and prioritized by our Advisory Panels. I discussed this initiative in detail in a recent blog post and invite you to watch for our release of related funding announcements in February.
In pursuit of our second goal, we’re commissioning development of a detailed blueprint for promoting the dissemination and implementation into practice of appropriate findings from the studies we fund. We plan to have a draft blueprint in hand for a fall 2014 workshop where we will solicit public comment; we’ll then release a final action plan by year’s end. In the meantime, we’ll promote dissemination and use of our Methodology Report while working with the healthcare community to decide how to best enhance, refine, and promote adherence to the standards the report outlines.
Our third goal recognizes that we can’t, by ourselves, support all of the high-quality patient-centered CER that is needed. To encourage others to adopt a patient-centered approach that engages the broad healthcare community, we must demonstrate that our approach indeed generates relevant, useful research findings that can be readily implemented. We’ll seek to do this through careful evaluation of the impact of our work, with a particular focus on our strategies for engaging those who will use the findings of the studies we fund—patients, caregivers, clinicians, and policy makers. We’ve recently formed a task force to help develop that comprehensive evaluation plan.
Finally, we look forward with great excitement to our first opportunity to review the findings of the research we’ve funded. Results from the 50 PCORI Pilot Projects we approved in 2012 will start to become available toward year’s end. Although not head-to-head comparative studies, these projects will inform the healthcare community on the most effective methods for engaging patients in research and care delivery. We expect these findings to bolster our case for giving patients and other stakeholders a prominent voice in research, as well as to suggest refinements to our engagement strategies.
Our New Year’s Resolution
We at PCORI appreciate and take seriously the unique opportunity Congress gave us in 2010 to develop and implement a different approach to producing research that will help patients and those who care for them make better-informed health and healthcare choices. The work we are privileged to lead is a public trust.
As we enter 2014, we resolve to continue to be responsible stewards of the resources we’ve been provided. In all of our efforts, we acknowledge the support and guidance we’ve received from patients, caregivers, clinicians, health systems, researchers, industry, payers, and others across the diverse healthcare community. We hope you’ll continue to be generous with your time and expertise as we move forward; we invite your comments on our work at firstname.lastname@example.org.
All of us at PCORI wish you a happy and healthy New Year.
Selby is PCORI’s Executive Director
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