Weill Cornell Medicine-led consortium receives $8 million to expand New York patient data network

A Weill Cornell Medicine-led database of more than 15 million patients has received close to $8 million in renewed funding from the Patient-Centered Outcomes Research Institute (PCORI) to expand the database and its use for health research for the next three years.

The INSIGHT Clinical Research Network is a collection of de-identified electronic health records and clinical trials data from the five top academic medical centers in New York City, centralized into one database. The collaboration has enabled a new level of city-wide data sharing, fostering research that provides insights on health care quality and cost, provision of health services, and relationships between health outcomes and social determinants of health, such as housing, employment and access to health services.

“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 health care,” said Dr. Rainu Kaushal, principal investigator of INSIGHT, senior associate dean of clinical research and chair of the Department of Population Health Sciences. “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.”

The INSIGHT consortium is led by Weill Cornell Medicine and includes Columbia University Irving Medical Center, Montefiore Health System, Mount Sinai Health System, NYU Langone Health and NewYork-Presbyterian. It is one of eight clinical research networks across the country that are supporting PCORnet®, the National Patient-Centered Clinical Research Network, with funding from the independent, non-profit research funding organization PCORI.

INSIGHT was established in 2013 with a $7 million grant and has been renewed once already. In the first phases, Weill Cornell Medicine and its consortium collaborators set up the network’s secure, cloud-based system and a governance body that includes patients, who contribute ideas for recruitment, research questions, and how studies are designed and communicated to communities.

The INSIGHT database has generated over $100 million in research funding for the network’s member institutions, involved hundreds of researchers from the consortium partners and is accessible to researchers around the country.

Currently, with a $9.8 million grant from the National Institutes of Health, INSIGHT is co-leading the “RECOVER PCORnet Adult Initiative to Use Real World and Electronic Health Record (EHR) Data to Study Post-Acute SARS CoV-2 Syndrome (PASC),” a nationwide consortium of more than 40 health care institutions analyzing EHR data to detect, predict, treat and prevent long COVID. The study seeks to leverage patient-driven data to address fundamental scientific questions, such as the disease manifestations over time and the susceptibility of certain populations to adverse outcomes.

From large nationwide efforts like RECOVER to local studies conducted by junior researchers, INSIGHT uses an innovative approach to meaningful engage with various stakeholders, including patients, their caregivers and families, as well as clinicians and researchers. The Accelerator Model, a multi-stakeholder engagement strategy that integrates and embeds patients and stakeholders into every dimension of INSIGHT infrastructure and research, fosters collaboration and a shared vision across scientific and non-scientific communities.

“This model has been essential to the network’s development of innovative solutions to answer pressing research questions and address health disparities,” Dr. Kaushal said.

The renewal will support studies of artificial intelligence (AI) and natural language processing of health data to aid in health decision-making, as well as studies on the long-term effects of COVID-19. It will also enable more pragmatic clinical trials, research studies on a health intervention already in place in a real-world setting.

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