Project Summary
The INSIGHT Clinical Research Network is a partnership of seven academic and clinical health centers in New York City that is led by Weill Cornell Medicine. INSIGHT’s mission is to understand the factors driving health resource utilization and health outcomes across a socioeconomically and demographically diverse urban population through the conduct of patient-centered outcomes research and health service research while increasing the uptake efficiency of evidence-based practices in clinical care.
The network is advancing more complete and comprehensive data sets for research by linking clinical data from its participating sites to complementary data sources, including both Medicare and Medicaid claims and claims from private health plans. This data linkage provides a more complete picture of patients’ healthcare experience and is essential for providing the necessary depth of data for real-world evidence studies.
To maximize research opportunities, INSIGHT actively engages with a multitude of different stakeholders including patients, clinicians, health system leaders, and researchers. The network is committed to prioritizing engagement and utilizes various methods including conducting listening sessions as well as assembling a Patient Advisory Board and Clinical Advisory Board. To uphold INSIGHT’s patient-centric model, patient engagement is a network priority. Patients are engaged throughout the research process by providing their perspectives on improving the design, implementation, and validity of research through avenues such as focus groups and interviews. Patient stakeholders also take part in accelerator teams, which are multi-stakeholder teams that work collaboratively to generate new ideas and approaches to research as well as aide in the response to funding opportunities.
INSIGHT is governed by the Governing Board (GB), comprising INSIGHT’s principal investigator (PI), three co-PIs, and site-level PIs for all participating institutions. The GB is tasked with maintaining the network’s data infrastructure, overseeing existing research projects, developing network policies, and creating stakeholder engagement strategies. The GB is also advised by an External Advisory Board that helps provide strategic insight and planning to INSIGHT’s leadership. Routine management of the network is handled by a program management office at Weill Cornell Medicine.
PCORnet is intended to serve as a national resource for conducting rapid, efficient, patient-centered observational and interventional randomized research that improves healthcare delivery and health outcomes. Over the course of this project period INSIGHT will enhance and optimize its infrastructure to support a variety of patient-centered studies by:
- Ensuring meaningful engagement of patients, caregivers, clinicians, delivery systems, payors, and researchers, in all phases of the research process
- Operating through a network model in which data remains at the source while allowing approved researchers within and outside the network to access it securely through a central point
- Facilitating the public sharing of resources and reusable tools to make research more efficient and reproducible
- Using the PCORnet CDM, which standardizes the data collected when patients receive care so that it is comparable across health systems and can be used for patient-centered outcomes research
- Using streamlined processes such as one central IRB for studies involving multiple systems and standardized data use agreements, to enable research to be quicker and more efficient
Title | INSIGHT Clinical Research Network |
Network Design | Clinical Research Network |
Lead Partner | Weill Cornell Medicine |
Other Partners | Albert Einstein College of Medicine Columbia University Irving Medical Center Hospital for Special Surgery Icahn School of Medicine at Mount Sinai New York-Presbyterian Hospital New York University School of Medicine |
Network Website | https://insightcrn.org/ |
About PCORnet® Clinical Research Networks (CRNs)
PCORI funded the development of PCORnet®, the National Patient-Centered Clinical Research Network, to make it easier and more efficient to conduct research. PCORnet is made up of Partner Networks that harness the power of large amounts of health data and patient partnerships. Clinical Research Networks (CRNs) are one type of network supported by PCORI. CRNs consist of two or more healthcare systems, including hospitals, integrated delivery systems, and federally qualified health centers. Each CRN transforms data gathered from routine patient care across its participating health systems to a consistent format, the Common Data Model (CDM), to enable rapid response to research-related questions. |
COVID-19-Related Study
Summary
This study received additional funding in 2020 to quickly initiate new research related to COVID-19. The additional research is in progress. PCORI will post the research findings on this page once the results are final.
Recent data suggests the development of coagulopathy as a result of the inflammatory response to SARS-CoV-2 infection is associated with poorer outcomes in patients with COVID-19. The enhancement to this project utilizes the PCORnet Distributed Research Network Operations Center, vanguard Clinical Research Network (CRN) sites, and the PCORnet COVID-19 Common Data Model (CDM) to optimize and validate key COVID-19 data elements related to the treatment and outcomes associated with COVID-19 coagulopathy. This initial work will help to inform future work to better understand the prevalence and role of coagulopathy in COVID-19 and potential treatment options.
In the enhancement:
- Vanguard CRN slides will load priority data elements into their PCORnet COVID-19 CDM
- PCORnet COVID-19 CDMs at participating sites will be assessed for research readiness
- Priority data elements will be validated by the CRNs through provenance surveys
- Coordinating Center and CRNs will perform limited validations of case definitions and derived data elements
Enhancement Award Amount: $28,000
MMM-IDD Capacity Building Project
This project received additional funding in 2022 to support infrastructure capacity building to facilitate patient-centered outcomes research aligned with two PCORI priority research areas: Maternal Morbidity and Mortality (MMM) and Intellectual and Developmental Disabilities (IDD).
PCORI funds patient-centered clinical comparative effectiveness research (CER) that focuses on outcomes that matter most to patients, their caregivers and their families. As part of PCORI’s reauthorization in December of 2019, Congress included two new research priority areas: maternal morbidity and mortality (MMM) and individuals with intellectual and developmental disabilities (IDD).
The goal of this project is to strengthen the capacity of PCORnet®, the National Patient-Centered Clinical Research Network’s infrastructure to facilitate patient-centered CER focused on these two priority areas by:
- Developing a roadmap for accelerating research in IDD and MMM using the PCORnet infrastructure focused on unanswered patient-centered CER questions that address critical gaps and needs in current knowledge of IDD and MMM.
- Identifying national experts in IDD and MMM who are affiliated with PCORnet partner organizations to inform understanding of PCORnet strengths and potential limitations to address PCORI’s strategic priorities.
- Identifying recommendations for infrastructure enhancements and preparatory activities necessary for future patient-centered CER on IDD and MMM by which the PCORnet infrastructure may be leveraged.
Enhancement Award Amount: $59,919
Final Report
A Roadmap for Accelerating Research in Intellectual and Developmental Disabilities Using PCORnet®
A Roadmap for Accelerating Research to Prevent Maternal Morbidity and Mortality Using PCORnet®
PCORnet® Expansion
This project received additional funding in 2023 to expand participation in PCORnet® with the aim of achieving a network representing the full diversity of the general US population. The PCORnet® Expansion initiative aligns with the Strategies to Leverage PCORnet to Advance PCORI’s National Priorities for Health and Evaluate PCORnet Performance approved by PCORI’s Board of Governors in September 2022.
PCORI funds patient-centered comparative clinical effectiveness research (CER) that focuses on outcomes that matter to patients, their caregivers and their families. The goal of this initiative is to strengthen the capacity of PCORnet to facilitate CER by accelerating participation of diverse, underrepresented and underserved populations in PCORnet® Studies, network governance and operations. The funding will support expansion of the INSIGHT Clinical Research Network by developing and implementing operational, data, research and engagement infrastructure at Houston Methodist. The addition of Houston Methodist expands INSIGHT’s geographic reach to the Houston metro area. It also diversifies the demographic composition of INSIGHT as the system serves large Hispanic/Latino and low-income populations.
Enhancement Award Amount: $275,000
Innovation Project
This project received additional funding support in 2023 to support infrastructure capacity building to facilitate patient-centered comparative clinical effectiveness research (CER) aligned with PCORI’s Strategies to Leverage PCORnet to Advance PCORI’s National Priorities for Health and Evaluate PCORnet Performance.
PCORI funds patient-centered CER that focuses on outcomes that matter most to patients, their caregivers and their families. The goal of this Innovation Project is to advance PCORI’s National Priorities for Health by enhancing data science and informatics capabilities of the PCORnet data infrastructure, including enhancing data capacity and open science to accelerate progress toward an integrated learning health system and expanding the use of PCORnet for patient-centered CER. The project is designed to support PCORI’s goal to increase the capacity and efficiency of PCORnet to support patient-centered CER and PCORnet® Studies. PCORnet® Studies are national scale studies that include two or more Clinical Research Networks participating in PCORnet and patient-partnership.
The project is focused on identifying scalable, reusable informatics solutions and innovations for the PCORnet infrastructure to improve the conduct of patient-centered CER by:
- Developing a set of short-term recommendations and draft implementation plan for data, query and knowledge infrastructure enhancements in Phase 3 of PCORnet to improve the efficiency and quality of data services to support patient-centered CER using PCORnet.
- Developing recommendations for a five-year strategic roadmap outlining opportunities and implementation timelines to optimize the PCORnet data and knowledge infrastructure to support patient-centered CER aligned with PCORI’s National Priorities for Health.
Enhancement Award Amount: $84,658
Mental and Behavioral Health
This project received additional funding in 2023 to support infrastructure capacity building to facilitate patient-centered clinical comparative effectiveness research (CER) aligned with PCORI’s Strategies to Leverage PCORnet to Advance PCORI’s National Priorities for Health and Evaluate PCORnet Performance
PCORI funds patient-centered CER that focuses on outcomes that matter to patients, their caregivers and their families. The goal of this project is to strengthen the capacity of the PCORnet infrastructure to facilitate CER aligned with PCORI’s National Priorities for Health and Research Agenda by:
- Identifying national experts in mental and behavioral health who are affiliated with organizations participating in PCORnet to inform understanding of the use of the PCORnet infrastructure.
- Identifying critical knowledge gaps and prioritizing unanswered patient-centered CER questions related to improving mental and behavioral health that PCORnet resources are well-suited to address.
- Developing a set of recommendations related to infrastructure enhancements, governance considerations and capacity-building opportunities specific to PCORnet that will support patient-centered CER to improve mental and behavioral health.
Enhancement Award Amount: $40,600