At the Patient-Centered Outcomes Research Institute (PCORI), we believe comparative clinical effectiveness research (CER) is important and that we have a critical role to play in establishing the nation’s CER priorities. I’m pleased to say that many respondents to the latest National Pharmaceutical Council (NPC) survey think so as well.
While results of CER studies that we and others are funding have yet to be completed, and CER’s ultimate ability to transform our healthcare system is still years away, nearly all respondents in this fourth annual survey agree that CER is here to stay and that it will become increasingly important in aiding decision making. Respondents also indicated that CER has not yet assessed the broader array of outcomes that matter to patients.
These are important insights. The survey tracks the attitudes of researchers, policymakers, employers, business groups, insurers, and health plans. Engaging with these stakeholders – along with patients, caregivers, clinicians, and other providers – and ensuring that the work we fund provides evidence they can trust and use, are essential if CER is to realize its potential in guiding health care.
That’s why Congress authorized PCORI’s establishment as an independent, non-profit organization focused on ensuring that the broad healthcare community is meaningfully engaged in our work. We’re governed by a diverse board that represents all stakeholders. And through an open and collaborative approach to research, we’re identifying the questions patients and other clinical decision makers need answered, so they can make better-informed choices that will lead to better outcomes.
We’ve already awarded $464.4 million to support 279 studies that advance patient-centered CER and we expect to commit another $1 billion over the next two years.
Two of our recent initiatives are especially exciting opportunities to generate more evidence more quickly about some the most common and burdensome health conditions affecting the nation. These initiatives directly address the priorities expressed by survey respondents and other stakeholders with whom we engage daily.
Research funded under our new pragmatic clinical studies initiative must directly compare two or more approaches to addressing an important clinical care challenge. These studies must also focus on a high-impact research topic identified by PCORI’s advisory panels, the Institute of Medicine, or the Agency for Healthcare Research and Quality. Cancers, mental health conditions, cardiovascular disease, and other chronic conditions are prominently featured on these lists because they pose a heavy burden on patients, families, and the healthcare system overall
We’ve committed $180 million to fund two rounds of research under this initiative. With a larger investment and longer study duration, we expect such projects to produce findings that can fundamentally shift our understanding of which options are most effective for individual patients.
Our second new initiative is the National Patient-Centered Clinical Research Network, known as PCORnet. This collaborative effort is linking an array of individual health data networks – some based in clinics, hospitals and health systems, others organized and managed by patients and their partners. These networks will help researchers draw on real-world clinical settings to study large amounts of de-identified patient data more quickly and cost-effectively than any individual network could. And it will do this with a core commitment to patient privacy and data security.
PCORnet provides an unprecedented opportunity to streamline clinical studies, empower patients, and build a foundation for more personalized medicine. Over the next year, the network will develop its policies for research and test common data models. If these efforts are successful, the network could expand eventually to more than 100 million individuals across the United States.
This is an exciting time for PCORI. Our research portfolio is expanding rapidly with a growing focus on targeted, high-priority topics and the development of infrastructure that can speed research and leverage real-world data to produce timely, relevant results. This is what’s needed to change practice and improve outcomes.
We’re glad the NPC survey respondents view us a leader in CER. I hope our progress and success will be even more evident in future surveys.
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Amen.
PCORI and the other agencies involved in CER work are doing their best under their mandates to improve the evidence base that will inform patients when patients must decide. This blog by PCORI seems similar to another from that agency that we previously commented on. This second blog struck me in a different way, however; the NPC survey was used to supply a sort of CER on PCORI’s CER value. That survey was sent to 435 “individuals” and stakeholders (not clear on site who was chosen for the survey and why but may be somewhere I did not see; one of the first measures of the value of information is the population studied and would like to have known more about who was surveyed and why) and responses were collated over nearly a year. Only 110 of the 435 surveyed completely responded (25%). Which raised again, our point in comment before, that evidence must be as close to correct and useful as possible if it is going to be given to patients. I applaud the transparency of the survey and PCORI, but I want to keep reminding those giving out the millions for CER, that no data may be better than wrong data.