Building the Data Infrastructure for Comparative Effectiveness Research
In December 2013, the nonprofit Patient-Centered Outcomes Research Institute (PCORI) approved $93.5 million in one-time funding to support the creation of PCORnet, a clinical research data network that will allow researchers to draw from 29 clinical data sources across the country when conducting comparative effectiveness research. PCORI was authorized by Congress as part of the Affordable Care Act in 2010 to fund research that provides patients and clinicians with evidence-based healthcare information.
Comparative effectiveness research, which helps medical researchers determine best clinical practices to recommend to providers, is often limited by a lack of readily available data, meaning researchers must conduct costly ad-hoc data collection efforts even for basic studies. With PCORnet’s centralized pool of data, researchers will be able to easily pull information on millions of patients, across different ages, ethnicities and socioeconomic status, who have agreed to participate in research. This ease of access to data will accelerate the pace of comparative effectiveness research, helping providers stay up-to-date on the latest best practices and ultimately helping researchers develop new and improved treatments.
PCORnet will comprise two types of subsidiary data sources: Clinical Data Research Networks, which contain information from hospitals and other providers, and Patient-Powered Research Networks, which contain information from patient groups centered around particular conditions. PCORI will provide funding to create 11 such clinical networks, including projects at the Harvard University Medical School and the Kaiser Foundation Research Institute, as well as 18 patient networks, covering conditions such as multiple sclerosis, epilepsy and immunodeficiency. A previously funded coordinating center, led by the Harvard Pilgrim Health Care Institute and the Duke Clinical Research Institute, will provide technical support to the partners and help evaluate their progress.
PCORnet will serve as a national resource, with secure, de-identified and interoperable data, for researchers and patient groups alike. In an effort to promote more patient-driven research, PCORnet will require participating patient groups to take an active role in governing and using this data. During an initial 18-month development phase, PCORI will work with its clinical and patient research network partners to develop data sharing and security policies, after which point the network is expected to be ready to support comparative effectiveness research.
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