PCORI at Age Five - A Record of Achievement, with Plenty Left to Do
About Us
- About PCORI
- The PCORI Strategic Plan
- Governance
- Evaluating Our Work
- PCORI's Advisory Panels
- Procurement Opportunities
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Provide Input
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Past Opportunities to Provide Input
- Systematic Review of the Impact of Doula Support During Pregnancy, Childbirth and Beyond (2024) -- Draft Key Questions
- Patient-Centered Economic Outcomes Landscape (2023-2024)
- Systematic Review of Audio Care for the Management of Mental Health and Chronic Conditions (2023) -- Draft Key Questions
- Proposed New Methodology Standards for Usual Care as a Comparator (2023)
- Stakeholder Views on Components of 'Patient-Centered Value' in Health and Health Care (2023)
- PCORI's Proposed Research Agenda (2021-2022)
- Proposed National Priorities for Health (2021)
- Proposed Principles for the Consideration of the Full Range of Outcomes Data in PCORI-Funded Research (2020)
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Past Opportunities to Provide Input
- Leadership
It’s hard to imagine that just five years ago, PCORI was little more than an ambitious vision to fund research on which healthcare options work best, under which circumstances, based on the outcomes most important to patients. The goal was to help patients and those who care for them make better-informed decisions about the healthcare choices they face daily.
Today, PCORI is much more than a vision. We are a vibrant national research organization with $1.18 billion in funding for patient-centered comparative clinical effectiveness research (CER) studies and the methods and infrastructure to support them, such as our PCORnet initiative to support faster, more efficient health research. I’m pleased to say that we also have an emerging record of results and impact, which you can hear more about during our upcoming Annual Meeting. But let me share a few highlights.
Stakeholder-driven Research
We realized early on that if the results of the studies we fund are to truly help patients, clinicians, and others across the healthcare system make better decisions, we had to engage these stakeholders in all aspects of the research we support. Doing such “stakeholder-driven research” makes it more likely that we’d pick the most important patient-centered research questions, fund the studies best designed to answer them, and build the partnerships that can help to broadly disseminate and drive the use of the results to improve care and outcomes.
We call this “research done differently” because it’s not the traditional way studies are conducted. Typically, scientists come up with their best ideas for important research questions and design the studies intended to answer them without seeking broader input from the healthcare community. This approach clearly has generated countless discoveries and remarkable advances. But when researchers are the only ones driving scientific inquiry, other critical perspectives can be missed—most notably, those of patients.
Like many other funders, we seek the scientific community’s best research ideas, but our approach ensures that patients and others from across the healthcare community have a place at the table in deciding which ideas we should support for funding. They help us identify and prioritize critical patient-centered research questions and then sit on the review panels that assess research proposals. They also serve as part of the research teams that design and conduct the studies we fund.
Emerging Results
Our process for funding stakeholder-driven research has led to a portfolio of 468 projects so far, many focusing on patient populations, topics, and outcomes that traditional research has not adequately addressed. It will be a few years before most of those studies are finished, analyzed, and have results available—rigorous research takes time, after all. But information from some of our funded studies is starting to emerge and offering a sense of how our approach can work and have an impact in practice. An increasing number of our awardees are publishing papers describing their work and results, and three recently published articles are worth particular note.
In one, researchers reported that for children released from the hospital after treatment for a serious bone infection, follow-up treatment with oral antibiotics appears to be as effective as that delivered through an intravenous line ending near the heart— an approach that is harder on children and parents and can lead to a range of complications.
Another report described the impact of a blood thinner on outcomes among stroke survivors after they left the hospital. A traditional study might have focused only on whether patients had another stroke or side effects like bleeding–important questions to be sure. But in this study, the researchers had asked patients what outcome was most important to them and learned that they cared most about how long they could live at home without suffering complications requiring additional hospital or nursing home care. The study found that taking the blood thinner did result in more time at home.
A third paper suggests we can do a better job determining which patients are more likely to benefit from a particular therapy. This study analyzed the results of the landmark Diabetes Prevention Program and identified patients most likely to benefit from the diabetes drug metformin and those likely to not benefit, while still facing the risk for rare harms associated with the drug. That’s the kind of work that can support the personalized approach to treatment we all seek.
We expect a number of our other early studies to soon offer similarly useful information. And we look forward to the results of larger, more recently funded studies that address critical real-world questions about improving care for conditions that place a heavy burden on the nation—including breast cancer, lung cancer, various forms of mental illness, lower back pain, and complications from hip fractures.
Growing Influence and Community
Beyond the potential impact of the studies we fund, we’re pleased to be part of a broader trend of incorporating patient and other stakeholder perspectives into the research process. And we’re proud that a growing number of healthcare leaders cite our influence in their own activities. Some examples:
- Influenced by our work, Geisinger Health System developed a strategic vision for patient and family engagement in research.
- Working with PCORI inspired the then-dean of the University of Arkansas for Medical Sciences to establish the Center for Pediatric Comparative Effectiveness Research to recruit and mentor young faculty interested in patient-centered CER.
- Our funding and requirements for research applications influenced the University of Pittsburgh to establish a research center to facilitate high-quality, patient-centered CER.
- The University of Texas Health Science Center at San Antonio recently instituted a series of policies and resources to support patient-centered outcomes research. Dawn Velligan, PhD, MA, a professor there, told us that our approach “has changed everything about the way the university thinks about research.”
Many other individual researchers say that after learning about PCORI’s approach, they can’t imagine going back to the way they used to conduct research. Steven H. Woolf, MD, MPH, of Virginia Commonwealth University Center for Human Needs, notes, “In our research, patients and the community now set the agenda.”
Looking Ahead
So we enter our sixth year confident that we’re on the right path to effectively investing the public funds entrusted to us in projects that will lead to improved patient care and outcomes. In doing so, we’ll continue to bring together researchers, patients, clinicians, and other healthcare stakeholders who have not traditionally worked with each other. They will help us identify the right questions to study and determine how best to answer them and disseminate the findings.
I hope you’ll visit our website to explore the research and engagement projects we’ve funded and read some of the stories we’re collecting about PCORI-supported research in action. I also hope you’ll join us online for key presentations from our upcoming Annual Meeting and contribute to conversation about the meeting at #PCORI2015. And as always, I want to thank you for your continued interest in and support of PCORI.
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Comments
October 5, 2015, 11:33 PM
Comment by Cherie C Binns…,
I will see you this week at PCORI. Excited about where this initiative is taking us. I serve on the Research Committee of one of the "Net's" organizations and am attending both as a Health Care Professional and a Person living well with a Chronic illness. Look for me. I will be learning and interacting.