Sync for Science

Sync for Science
Name	Sync for Science
Launched	2018
Developer	Centers for Medicare & Medicaid Services; Office of the National Coordinator for Health Information Technology
Purpose	Health data access and research interoperability
Country	United States

Sync for Science

Sync for Science is an initiative to enable patient-authorized health data sharing from electronic health records for biomedical research, driven by federal policy and industry standards. It connects clinical systems, research institutions, and patient-facing applications to facilitate data flow while emphasizing patient consent and standardized APIs. The program intersects with regulatory frameworks, health IT vendors, research networks, and standards development organizations.

Overview

Sync for Science creates a standardized pathway for patients to permit the transfer of health data from systems like Epic Systems Corporation and Cerner Corporation to research entities such as All of Us Research Program and academic centers including Johns Hopkins University and Mayo Clinic. It leverages standards from Health Level Seven International and policy from Centers for Medicare & Medicaid Services and Office of the National Coordinator for Health Information Technology to operationalize patient-directed data sharing. The initiative involves stakeholders such as National Institutes of Health, Food and Drug Administration, American Medical Association, Kaiser Permanente, Partners HealthCare (now Mass General Brigham), and health information exchanges like Sequoia Project.

History and Development

The program emerged after federal actions including rules from Centers for Medicare & Medicaid Services and the ONC information blocking final rule influenced by legislation like the 21st Century Cures Act. Early pilots involved collaborations with organizations such as All of Us Research Program, Broad Institute, Vanderbilt University Medical Center, and private sector partners like Google and Apple Inc.. Initial demonstrations were coordinated with standards bodies including HL7 FHIR Implementation Guide efforts, and consortia such as CommonWell Health Alliance and DirectTrust participated in shaping workflows. Funding and guidance came from offices within Department of Health and Human Services and research programs under National Institutes of Health.

Technical Architecture and Standards

The architecture centers on APIs based on Fast Healthcare Interoperability Resources as defined by Health Level Seven International. OAuth2-based authorization flows align with specifications from Internet Engineering Task Force and adapt work from OpenID Foundation frameworks. Data models map to resources used by projects like SMART on FHIR and implementations from vendors such as Epic Systems Corporation and Cerner Corporation. Consent and provenance mechanisms reference concepts promulgated by HL7 Clinical Document Architecture contributors and utilize terminology from SNOMED International and LOINC curated by Regenstrief Institute. Transport and security rely on standards promulgated by National Institute of Standards and Technology and align with privacy guidance from Office for Civil Rights (OCR) at Department of Health and Human Services.

Implementation and Participating Organizations

Implementation pilots included academic medical centers like Vanderbilt University Medical Center, Brigham and Women's Hospital, and University of California, San Francisco partnering with research initiatives such as All of Us Research Program and consortia including Sequoia Project. Industry participants encompass Epic Systems Corporation, Cerner Corporation, Oracle Corporation (Health division), Google Health, and app developers in ecosystems led by Apple Inc. and Amazon Web Services. Standards organizations such as Health Level Seven International and registries like CommonWell Health Alliance and DirectTrust provided governance and technical collaboration. Federal agencies including Centers for Medicare & Medicaid Services, Office of the National Coordinator for Health Information Technology, and National Institutes of Health coordinated policy and research priorities.

Use Cases and Applications

Use cases span cohort discovery and recruitment for initiatives like All of Us Research Program and pragmatic clinical trials conducted by networks such as Patient-Centered Outcomes Research Institute affiliates. Secondary uses include population health studies by institutions like Kaiser Permanente and translational research at centers such as Broad Institute and Massachusetts General Hospital. Mobile health applications developed on SMART on FHIR ecosystems enable patient-mediated data transfer to registries and analytics platforms used by research consortia including Observational Health Data Sciences and Informatics. Public-private collaborations with companies like Google and Amazon Web Services enabled cloud-based aggregation and de-identification pipelines.

Privacy, Security, and Consent

Patient consent workflows adhere to privacy frameworks overseen by Office for Civil Rights (OCR) with reference to the Health Insurance Portability and Accountability Act of 1996 administered by Department of Health and Human Services. Security controls reference guidance from National Institute of Standards and Technology and legal standards shaped by the 21st Century Cures Act. Implementations use OAuth2 and OpenID Connect patterns with provenance tracking informed by HL7 consent artifacts and terminology managed by SNOMED International and LOINC. Institutional Review Boards at entities like Johns Hopkins University and Vanderbilt University Medical Center evaluate research protocols leveraging Sync for Science-enabled data flows.

Challenges and Future Directions

Challenges include harmonizing diverse EHR implementations across vendors such as Epic Systems Corporation and Cerner Corporation, scaling consent management used by networks like Sequoia Project, and addressing legal interpretations under legislation like the 21st Century Cures Act. Future directions point toward broader adoption via integration with national research infrastructures like All of Us Research Program, expanded standardization from Health Level Seven International, and enhanced privacy-preserving techniques promoted by National Institute of Standards and Technology and research centers such as Broad Institute. Continued collaboration among federal agencies including Office of the National Coordinator for Health Information Technology and Centers for Medicare & Medicaid Services, academic institutions, and industry will shape uptake and technical evolution.

Category:Health information technology