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Comment on the Proposed New and Revised PCORI Methodology Standards (2016)
- 1. Standards for Formulating Research Questions
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WASHINGTON, D.C. (Dec. 17, 2013) – The Patient-Centered Outcomes Research Institute (PCORI) today approved $93.5 million to support 29 health data networks that together will form an ambitious new resource known as PCORnet, the National Patient-Centered Clinical Research Network. PCORI envisions PCORnet to be a secure, national data network that improves the speed, efficiency, and use of patient-centered comparative effectiveness research (CER).
By integrating data available in the 29 individual networks, PCORnet aims to provide access to a large amount of diverse, nationally representative health information that can support a range of study designs. It will reduce the time and effort needed to launch new studies and focus research on questions and outcomes especially useful to patients and those who care for them.
Moreover, PCORnet will join together networks operated by both patient communities and health systems and will require patients' and other stakeholders' involvement in all aspects of the collection and use of the data. By enabling researchers and patients, clinicians, and other end-users of study results to interact directly and jointly determine research priorities, such as the selection of specific studies to support, PCORnet aims to advance the shift in clinical research from investigator-driven to patient-centered studies.
“Conducting health research efficiently and effectively requires data that is accessible, usable, and protects patients’ privacy and security,” said PCORI Executive Director Joe Selby, MD, MPH. “We intend PCORnet to be a national resource -- a collaborative, interoperable, and secure ‘network of networks’ -- that serves both the scientific and patient communities. The essential difference between PCORnet and previous research networks is the critical involvement of healthcare systems, clinicians, and patients in governing and using the network resources.“
“PCORnet will serve as an important foundation for transforming the nation’s healthcare system into one that is able to constantly learn what works best by facilitating more efficient comparative effectiveness research,” said Rachael Fleurence, PhD, Director of PCORI’s CER Methods and Infrastructure Program. “It also will promote broader participation of patients, clinicians, health systems, and payers in the research process and help connect patients interested in participating in studies with researchers conducting trials.”
The awards approved today by PCORI's Board of Governors will support the development and enhancement of the major components of PCORnet over the next 18 months. PCORI will fund 11 Clinical Data Research Networks (CDRNs), partnerships among health clinics, hospitals, and other health systems with the ability to collect and use information from multiple data sources such as electronic health records (EHRs). PCORI also will support 18 Patient-Powered Research Networks (PPRNs) formed by patients and their partners to promote information exchange on a particular condition and find answers to improve their health outcomes. Details about the awardees are available here.
Each of the CDRNs and PPRNs will maintain a collection of rich clinical data gathered in “real-time” in “real-world” settings, such as clinics, through tools such as EHRs and patient portals that individuals use to share their health-related experiences and other clinical information. The networks will collect and store data under rigorous security protocols and data sharing across networks will be accomplished using a variety of methods that prevent patient identification and ensure confidentiality.
During the 18-month development phase, award recipients will expand and improve their individual systems, work to standardize their data, and develop policies governing data sharing and security and protection of patient privacy. They also will refine their capacity to engage and recruit patients and other stakeholders interested in participating in research. By the end of this phase, PCORI expects a functional research network to be in place and prepared to support CER studies.
A Coordinating Center jointly led by Harvard Pilgrim Health Care Institute and Duke Clinical Research Institute will provide the CDRNs and PPRNs expert guidance and management as they integrate into the larger network. PCORI selected the team to serve as the Coordinating Center through a competitive process earlier this year. More information about PCORnet and its constituent networks will be available over time at www.pcornet.org. The data network awards were among 82 funding awards totaling $191 million approved by PCORI's Board during a special meeting today.
The Board also approved $97.5 million in funding for 53 patient-centered CER studies. All awards are approved pending completion of a business and programmatic review by PCORI staff and completion of a formal award contract.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, non-profit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work.
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The Patient-Centered Outcomes Research Institute sends weekly emails about opportunities to apply for funding, newly funded research studies and engagement projects, results of our funded research, webinars, and other new information posted on our site.