PCORI Gives $8M to Grow Patient Data Sharing Network for Research

The Patient-Centered Outcomes Research Institute (PCORI) has granted nearly $8 million in renewed funding to expand a patient dating sharing network in New York set to enable greater healthcare research.

The Weill Cornell Medicine-led database, INSIGHT Clinical Research Network, has amassed de-identified patient and clinical trials data from more than 15 million patients across the five top academic medical centers in New York City.

The INSIGHT consortium, established in 2013, is one of eight clinical research networks that support the National Patient-Centered Clinical Research Network (PCORnet), the press release stated. PCORnet aggregates health data, research expertise, and patient insights to assist health systems across the country with patient-centered research.

The network aims to further patient data sharing through New York City to advance research on topics such as healthcare quality, healthcare cost, health outcomes, and social determinants of health.

“INSIGHT is propelling data science forward and allowing us to harness an extensive amount of clinical information from all aspects of the patient experience to improve healthcare,” Rainu Kaushal, MD, principal investigator of INSIGHT and senior associate dean of clinical research at Weill Cornell Medicine, said in a public statement. "This renewed funding will enable us to maximize our capabilities to carry out groundbreaking research, and continue to maintain and expand this high-quality, comprehensive resource for researchers nationwide."

Weill Cornell Medicine and its consortium collaborators formed a governance body of clinicians, patients, and other stakeholders, who will contribute ideas for trial recruitment, research questions, and how studies are designed and communicated to communities.

“Healthcare is very fragmented, especially in New York City,” Andrea Cohen, project director at INSIGHT, said. “In order to understand the impact of healthcare on patients and accelerate the pace of quality research, we need to bring together data from many sources and make it widely accessible.”

Utilizing de-identified datasets to promote clinical research is a growing in the healthcare field.

In early 2020, EHR vendor Cerner announced the development of a Learning Health Network (LHN) to drive clinical research. Cerner’s LHN is made up of a diverse group of 74 health systems that are helping to fuel Cerner Real-World Data (CRWD), a national de-identified dataset that includes 88 million patients and 786 million clinical encounters.

“The true promise of the digital age is to use data to improve everyday health around the world,” Cerner President & CEO David Feinberg, MD, noted in a press release.

“Healthcare is far too complex, inefficient, and expensive,” he continued. “We have to break down industry silos and evolve from simply accumulating data to generating meaningful insights that can accelerate therapy development.”