The Patient-Centered Outcomes Research Institute, an independent not-for-profit organization created in the Affordable Care Act, has issued two funding announcements to establish the National Patient-Centered Clinical Research Network.
The network actually will be a network of networks that bring together providers, patients and insurers involved in efforts to improve informed health care decision making and accelerate use of evidence-based treatments.
The institute, known as PCORI, is making available $56 million in funding to support up to eight new or existing Clinical Data Research Networks. These are organizations of two or more health systems combining their clinical and financial data to support outcomes research. Applicable data would include health plan enrollment files, claims data reflecting comorbid conditions and clinical outcomes, bio-physiologic data such as height and weight, blood pressure, lab results, diagnoses, mortality rates and outcomes data.
“Networks may entirely comprise such already available clinical and administrative data, or they may also perform primary data collection to obtain additional detail on specific conditions or treatments,” according to an explanation of the initiative. “Some of these efforts are self-described as registries, particularly when attention is directed to studying a single condition or a single treatment.”
PCORI also is making available $12 million to develop up to 18 new or existing Patient-Powered Research Networks. “At their core, PPRNs begin with an assembly of patients and caregivers and a commitment to spread membership to all who wish to participate in improving care for individuals with a certain condition or set of conditions,” according to the explanation. Members would participate in research studies, share data, create and adhere to protocols, possibly participate in clinical trials, contribute research ideas and disseminate findings. Patients would provide their own patient-reported data to drive research or actively seek research affiliations.
PCORI expects the separate networks over time to become more integrated and a separate funding announcement to build a Coordinating Center is expected later this spring. More information on the current announcements is available here. Letters of intent are due June 19 with applications due September 27.
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