Creation of a Trusted Data Broker, Development of a Data Access Platform and Design of a Public Private Partnership to Implement the NIH's Data COUNTS Program for Access to Quality Data.

Data COUNTS Trusted Data Broker
Abstract for FNIH OT Proposal
Creation of Trusted Data Broker to Implement Data COUNTS Program
September 16, 2024
Data COUNTS Trusted Data Broker Abstract for FNIH OT Proposal Creation of Trusted Data Broker to Implement Data COUNTS Program September 16, 2024 The Data Collect Once Use Numerous TimeS (Data COUNTS) initiative will facilitate better data access to address health outcomes, eliminate costly and burdensome data collection processes, and improve the quality and speed of time-to-access data. The intent of Data COUNTS is to deliver a federated electronic health record (EHR) and health data collection and transmission architecture based on open-industry data and interoperability standards for HHS. The FNIH will use its extensive experience designing, soliciting, and managing complex data infrastructures and public-private partnerships in the health sciences field to establish a Trusted Data Broker (TDB). The TBD will establish a secure, cloud-based platform for quality-controlled data collection, transmission, and analysis. The TDB will establish the necessary relationships and governing bodies to coordinate activities across all stakeholders, from data ingestion to analysis. The system will use extensive provenance and data lineage tracking and a robust data model to enable HHS researchers to interrogate patient data in novel ways. The FNIH is committed to meeting the goals of the Data COUNTS initiative and revolutionizing health science capabilities, addressing a critical gap in the United States’ ability to advance biomedical sciences compared to other industrial nations. Patient engagement and trust will be central features of all activities, and the system will be designed and implemented with the eventual goal to empower patients with full control and transparency over how their data are accessed and used. The first year of the project will focus on (1) design and implementation of a phased strategic plan for creation of the TDB, (2) creation of an engagement strategy and a management strategy, and (3) securing technical contractor(s) to design and deliver a minimal viable product to execute HHS-defined use cases. Activities in the first year will lay the foundation for sustainable and scalable development in the future.

Grant Number: 3OT2OD039723-01S2
NIH Institute/Center: NIH
Principal Investigator: Stacey Adam