PCORI Funds Network for More Efficient Patient-Centered Research | Healthcare Informatics Magazine | Health IT | Information Technology 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.

Topics

News

Former Health IT Head in San Diego County Charged with Defrauding Provider out of $800K

The ex-health IT director at North County Health Services, a San Diego County-based healthcare service provider, has been charged with spearheading fraudulent operations that cost the organization $800,000.

Allscripts Touts 1 Billion API Shares in 2017

Officials from Chicago-based health IT vendor Allscripts have attested that the company has reached a new milestone— one billion application programming interface (API) data exchange transactions in 2017.

Dignity Health, CHI Merging to Form New Catholic Health System

Catholic Health Initiatives (CHI), based in Englewood, Colorado, and San Francisco-based Dignity Health officially announced they are merging and have signed a definitive agreement to combine ministries and create a new, nonprofit Catholic health system.

HHS Announces Winning Solutions in Opioid Code-a-Thon

The U.S. Department of Health and Human Services (HHS) hosted this week a first-of-its-kind two-day Code-a-Thon to use data and technology to develop new solutions to address the opioid epidemic.

In GAO Report, More Concern over VA VistA Modernization Project

A recent Government Accountability Office (GAO) report is calling into question the more than $1 billion that has been spent to modernize the Department of Veterans Affairs' (VA) health IT system.

Lawmakers Introduce Legislation Aimed at Improving Medicare ACO Program

U.S. Representatives Peter Welch (D-VT) and Rep. Diane Black (R-TN) have introduced H.R. 4580, the ACO Improvement Act of 2017 that makes changes to the Medicare accountable care organization (ACO) program.