The Patient-Centered Outcomes Research Institute (PCORI) has approved $93.5 million to support 29 clinical research data networks that together will form a new resource known as PCORnet, the National Patient-Centered Clinical Research Network.
PCORI foresees PCORnet to be a secure, national data network that improves the speed, efficiency, and use of patient-centered comparative effectiveness research (CER), its officials say. 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 aim to 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.
Additionally, 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 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,” PCORI executive director Joe Selby, M.D., said in a statement. “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.”
Furthermore, 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.
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, PCORI officials say.
In September, PCORI handed out more than $114 million over three years to fund research focused on heart disease, chronic pain, several types of cancer, obesity, diabetes, kidney disease, autism, respiratory disorders, and various mental health conditions.