Project Summary
The mission of the INSIGHT Clinical Research Network (CRN) is to create an accessible and scalable clinical research network to facilitate patient-centered research, learning healthcare systems, and support PCORnet®, the National Patient-Centered Clinical Research Network. The CRN is characterized by a diverse population of over 13 million patients across six major health systems in New York City. INSIGHT includes health systems and organizations representing academic medical centers, clinical and translational science centers, patients and advocates, public and private health plans, and research institutions. INSIGHT is committed to further promoting and upholding the core principles of PCORnet in this next phase of partnership with PCORI and PCORnet. The team will achieve these principles by:
- Emphasizing patient-centeredness across all of research and programmatic activities
- Participating actively in PCORnet’s learning health network
- Prioritizing widespread dissemination of research results to the health systems, patients, and patient populations the team serves
- Ensuring data security and quality through a limited research-ready central database
INSIGHT continues to emphasize patient and stakeholder engagement in all of its research activities. INSIGHT has developed a model for stakeholder engagement through Accelerator Teams, composed of patients, people, advocates, clinicians, researchers, funders, and government, public health, health system executives, and industry leaders. The team brings together stakeholders to help ask research questions, provide input into the findings, and support the dissemination of information back out to communities. Crispin Goytia, who leads INSIGHT’s patient engagement strategy, serves on PCORI’s Patient Engagement Advisory Board and contributes her expertise to the national PCORnet network. The team will continue engaging patients, caregivers, clinicians, and communities to explore groundbreaking ways to advance the practice of research and foster public trust in research.
The INSIGHT CRN offers innovative services and data to support both observational and interventional research on a local and national scale. The team continues to pursue new and innovative improvements to its database, including recent expansions of data for rapid COVID-19 research and unique data linkages that allow the team to connect clinical data, social determinants of health data, claims data, and other data sources for comprehensive research studies.
INSIGHT continues to support national PCORnet-designated research studies and contribute to PCORnet leadership and governance structure. INSIGHT has provided significant data, tools, engagement, and methods to PCORnet, by obtaining and linking claims data, developing patient matching methodologies, and expanding the common data model to include diverse data types including social determinants of health data and disease specific data. The team continues to find ways to share its expertise across the network and has contributed resources on several of these areas including its Accelerator Teams model to the online PCORnet Knowledge repository for public access.
INSIGHT will continue to seek out new opportunities to support national studies and ensure the inclusivity of its patient stakeholders in disseminating and implementing clinical and health system findings. The team has supported the dissemination of research findings through over 50 publications in academic journals in the last two years, contributions through lay media outlets such as the New York Times, updates and information accessible through INSIGHT’s website, and promotion of INSIGHT’s quarterly newsletter to reach as wide an audience as possible. INSIGHT is committed to further supporting PCORnet’s core mission of producing patient-centered, multi-network, observational and interventional pragmatic trials utilizing the substantial resources of the PCORnet network.
MMM-IDD Capacity Building Project
Summary
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 outcomes research (PCOR), a type of comparative clinical effectiveness research (CER) that focuses on outcomes that matter 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 PCOR focused on these two priority areas by:
- Developing MMM and IDD research agendas focused on CER questions which the PCORnet® infrastructure and resources are well- suited to address,
- 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, and
- Identifying potential gaps in existing PCORnet capacity (e.g., data resources) needed to address high-priority IDD/MMM PCOR questions.
Enhancement Award Amount: $59,919
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
Project Information
Key Dates
*All proposed projects, including requested budgets and project periods, are approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award contract.