The Patient-Centered Outcomes Research Institute (PCORI) has approved $93.5 million to support 29 clinical research data networks it hopes to integrate to improve comparative effectiveness research (CER).
PCORI plans to combine the networks in an ambitious new resource known as PCORnet, the National Patient-Centered Clinical Research Network, to provide access to a large amount of diverse, nationally representative health information that can support a range of study designs.
In addition to improving the speed and efficiency of research, the group wants to make research more patient-centered. The aim is to create a collaborative, interoperable and secure "network of networks" that serves both scientists and patients, according to an announcement.
Eleven Clinical Data Research Networks (CDRNs) will be funded, such as the National Pediatric Learning Health System from the Children's Hospital of Philadelphia. In these, healthcare organizations pool information from various data sources including electronic health records.
In addition, funding will go to 18 Patient-Powered Research Networks (PPRNs) formed by patient groups to exchange information on a particular condition. The Epilepsy Foundation's Collaborative Patient-Centered Rare Epilepsy Network and the American BRCA Outcomes and Utilization of Testing Patient-Powered Research Network (ABOUT Network) at University of South Florida are among these.
During an 18-month development phase, these networks will standardize their data and focus on security and data-sharing capabilities before the "network of networks" is in place.
Guidance for these networks will be available through a Coordinating Center jointly led by Harvard Pilgrim Health Care Institute and Duke Clinical Research Institute.
In April, PCORI announced plans to invest roughly $68 million to create a national "data-rich infrastructure" to support CER. It September it handed out more than $114 million over three years to fund research focused on heart disease, chronic pain, cancer and other conditions, including projects to engage minority patients and caregivers in the studies.
Kaiser Permanente has been comparing the effectiveness of various treatments for years and found that the cost of treatment doesn't necessarily translate to effectiveness.
To learn more:
- find the announcement