Skip to content Skip to navigation

PCORI Funds Network for More Efficient Patient-Centered Research

December 19, 2013
by Rajiv Leventhal
| Reprints

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.



ONC National Coordinator Gets Live Look at Carequality Data Exchange

Officials from Carequality have stated that there are now more than 150,000 clinicians across 11,000 clinics and 500 hospitals live on its network. These participants are also able to share health data records with one another, regardless of technology vendor.

American Red Cross, Teladoc to Provide Telehealth Services to Disaster Victims

The American Red Cross announced a partnership with Teladoc to deliver remote medical care to communities in the United States that are significantly affected by disasters.

Report: The Business of Cybercrime in Healthcare is Growing

While stolen financial data still has a higher market value than stolen medical records, as financial data can be monetized faster, there are indications that there is ongoing development of a market for stolen medical data, according to an Intel Security McAfee Labs report.

Phishing Attack at Baystate Health Potentially Exposes Data of 13K Patients

A phishing scam at Baystate Health in Springfield, Mass. has potentially exposed the personal data of 13,000 patients, according to a privacy statement from the patient care organization and a report from MassLive.

New Use Cases Driving Growth in Health Data Exchange through Direct

In an update, DirectTrust reported significant growth in Direct exchange of health information and the number of trusted Direct addressed enabled to share personal health information (PHI) in the third quarter of 2016.

Insurers to CBO: Consider Private Insurers’ Data in Evaluations of Telemedicine

Eleven private insurers, including Aetna, Humana and Anthem, are urging the Congressional Budget Office (CBO) to consider the experience of commercial insurers when evaluating the impact of telemedicine coverage in Medicare.