2020 LEAP in Health IT Projects

Development and Testing of Data Sharing Functionality for Health System Participating in National Cardiovascular Disease Registries

Project Overview

Healthcare providers expend many resources to ensure that patient data are submitted according to clinical registry specifications. This means that providers often must re-verify data. Registries also can have other data challenges, such as slow retrieval time, incompleteness, inaccuracy, and a lack of integration into provider workflows.

These challenges make administering registries more difficult by increasing costs and complexity while reducing providers’ abilities to discover new, essential insights from the data, particularly those that address quality and improvement.

The Chesapeake Regional Information System for our Patients (CRISP), in partnership with the American College of Cardiology (ACC), is working to build upon known standards and systems—such as the Health Level Seven International® (HL7®) Fast Healthcare Interoperability Resources® (FHIR®) standard — that will allow healthcare organizations to accelerate the adoption of modern data standards without increasing provider burden.

The project team will develop a solution and an implementation guide that is scalable to all hospitals contributing to National Cardiovascular Disease Registries (NCDR) and other registries. They will leverage a Substitutable Medical Applications, Reusable Technologies (SMART) on FHIR application programming interface (API) and work with health systems and their vendors to develop a pilot solution that will extract data according to the FHIR standard.

This project addresses the Leading Edge Acceleration Projects (LEAP) in Health Information Technology (Health IT) fiscal year 2020 special area of interest 1: Advancing Registry Infrastructure for a Modern API-based Health IT Ecosystem.

Project Dates

This project began in 2020 and completed in 2023.

Project Goals

The goals of this project are to:

• Reduce provider burden and operational expenses by capturing key data elements from new and old electronic health records (EHRs).
• Develop a framework for integrating registries into provider workflows by using and further constraining the FHIR standard and Bulk FHIR Implementation Guide through a new clinical research network (CRN) framework FHIR implementation guide.
• Build on the lessons learned from the Women’s Health Technologies CRN FHIR Implementation Guide, allowing registries to focus on the insights and knowledge gained from the data rather than cleaning and validating data.
• Leverage SMART on FHIR by allowing CRISP to securely access APIs.
• Scale the clinical registries’ abilities to acquire existing and novel data from across the country and demonstrate how EHR systems can sustainably support integration with clinical registries.

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Cumulus: A Universal Research Sidecar for a SMART Learning Healthcare System

Project Overview

The vast and rich data found in electronic health record systems can offer researchers and scientists important clues that may lead to a new generation of scientific insights. However, the ability to use these “bulk data” at scale often requires expensive and time-consuming manual processes, proprietary software, and data transformations into complex models. Enabling researchers to work with bulk sets of clinical data without cumbersome efforts to reorganize the information could serve as a catalyst to enable precision medicine and new scientific discoveries.

Children’s Hospital Corporation, in collaboration with Yale University and Yale-New Haven Health, aims to develop a platform based on Health Level Seven International® (HL7®) Fast Healthcare Interoperability Resources® (FHIR®) that leverages bulk data to support an ecosystem for research and learning, called Cumulus.

Cumulus will build from existing standards and open health information technology (IT) tools to offer turnkey functions that support rapid learning within a healthcare system. Tools to be developed and tested will allow users to annotate FHIR data for analytics, de-identify data, and query cohorts.
This project addresses the Leading Edge Acceleration Projects (LEAP) in Health IT fiscal year 2020 special area of interest 2: Cutting Edge Health IT Tools for Scaling Health Research.

Project Dates

This project began in 2020 and is estimated to be completed in 2023.

Project Goals

The goals of this project are to:

• Leverage the Substitutable Medical Applications, Reusable Technologies (SMART)/HL7 Bulk Data API—called Flat FHIR—to provide data at scale through a cloud-based platform called Cumulus that will support an apps ecosystem for research and learning.
• Select and adapt an appropriate open-source de-identification toolkit to implement different privacy settings for FHIR data sets.
• Standardize a set of processes and tools as modules on Cumulus supporting bulk data de-identification, basic cohort-building, and FHIR data analytics.

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FHIR Factories: An Evolving Digital Architecture to Scale Health Research

Project Overview

Healthcare practitioners and researchers face a rising wave of exponentially increasing data, with limited ability to collect and manually analyze those data for use in care delivery and research.

To overcome these challenges, MedStar Health Research Institute (MHRI), in collaboration with the Georgetown Medical Center, will develop and evaluate open health information technology (health IT) tools based on the Health Level Seven International® (HL7®) Fast Healthcare Interoperability Resources® (FHIR®) standard. These tools will be developed and tested to support data acquisition, data transformation, and advanced analytics. Additionally, this project will identify needs and gaps for researchers.

This project aims to better understand the current state of open source health IT tools through a rigorous evaluation, including an environmental scan, stakeholder interviews with key participants, and usability evaluations. Using this information, MHRI will identify and prioritize critical needs for future open source health IT tools.

This project addresses the Leading Edge Acceleration Projects (LEAP) in Health IT fiscal year 2020 special area of interest 2: Cutting Edge Health IT Tools for Scaling Health Research.

Project Dates

This project began in 2020 and completed in 2022.

Project Goals

The goals of this project are to:

• Conduct a landscape analysis to explore, identify, and describe current open health IT–based tools for research.
• Identify needs for new health IT tools for research that require development, and address those needs through the project’s FHIR Factory platform.
• Optimize data factory platforms to address challenges in data acquisition.
• Transform data into actionable knowledge that is accessible via application programming interfaces (APIs).
• Disseminate actionable knowledge through Substitutable Medical Applications, Reusable Technologies (SMART) on FHIR applications.

Integrating Standardized Data to Advance Person-Centered Planning, Outcomes, and Value-Based Payment Models

Project Overview

State health departments often face challenges in supporting comprehensive person-centered case management, particularly for individuals with developmental disabilities. Without an automated solution to manage and monitor healthcare services, health departments must rely on manually compiled information and paper-based, labor intensive processes, using ad hoc reports generated from various systems and data sources. These limitations result in shortcomings and inefficiencies for citizens and administrators.

Through this project, the Missouri Department of Mental Health (MDMH) is working to implement a statewide case management system to improve the efficacy of waiver programs for individuals with developmental disabilities, efficiency and access of services provided to patients, program transparency and reporting capabilities, and data exchange and effective use of standardized data across stakeholders and partners.

This project aims to improve the capture, access, and use of structured, electronic data and link health and case management systems to support person-centered planning. MDMH will integrate information across service delivery models, including home and community-based services (HCBS) that provide health and human services while advancing value-based payment (VBP) arrangements for individuals with developmental disabilities. The project team will develop a HCBS VBP Roadmap to inform state and community stakeholders on future strategic, technical, and data integration projects.

This project addresses the Leading Edge Acceleration Projects (LEAP) in Health Information Technology (Health IT) fiscal year 2020 special area of interest 3: Integrating Health Care and Human Services Data to Support Improved Outcomes.

Project Dates

This project began in 2020 and completed in 2022.

Project Goals

The goals of this project are to:

• Improve electronic data sharing among Missouri healthcare providers, Missouri Regional Offices, and HCBS providers through adoption of the electronic Long-Term Services and Supports (eLTSS) standard.
• Test the eLTSS standard across HCBS providers and supporting HCBS technology systems.
• Develop and share best practices and lessons learned with the stakeholders supporting HCBS VBP models.
• Build capacity in Missouri for adopting the U.S. Core Data for Interoperability (USCDI) in healthcare and human services programs.
• Develop a HCBS VBP Roadmap to build a reusable technical infrastructure for structured person-centered planning data capture and exchange.