{"id":9546,"date":"2016-03-21T11:46:34","date_gmt":"2016-03-21T15:46:34","guid":{"rendered":"https:\/\/healthit-gov.go-vip.net\/buzz-blog\/?p=9546"},"modified":"2026-01-06T05:37:17","modified_gmt":"2026-01-06T05:37:17","slug":"nih-and-onc-launch-the-sync-for-science-pilot","status":"publish","type":"post","link":"https:\/\/healthit.gov\/blog\/insights-updates\/nih-and-onc-launch-the-sync-for-science-pilot\/","title":{"rendered":"NIH and ONC Launch the Sync for Science (S4S) Pilot: Enabling Individual Health Data Access and Donation"},"content":{"rendered":"\n<h2 class=\"wp-block-heading\" id=\"h-s4s-pilots-are-coming\"><strong>S4S pilots are coming!<\/strong><\/h2>\n\n\n\n<p>On February 25, 2016, the National Institutes of Health (NIH), in collaboration with the Office of the National Coordinator for Health IT (ONC), announced the launch of <a href=\"https:\/\/syncfor.science\/\" target=\"_blank\" rel=\"noreferrer noopener\">Sync for Science (S4S)<\/a>, a pilot to allow individuals to access their health data and send it to researchers in support of the goals of the Precision Medicine Initiative (PMI). Individual data donation will be a key component of the <a href=\"https:\/\/www.nih.gov\/precision-medicine-initiative-cohort-program\" target=\"_blank\" rel=\"noreferrer noopener\">PMI Cohort Program<\/a>, which aims to enroll more than one million U.S. participants who will volunteer to donate health data about themselves for precision medicine research. ONC, NIH, and the Harvard Medical School Department of Biomedical Informatics will coordinate the implementation of the S4S pilot in collaboration with EHR developers who have committed to participate: Allscripts, athenahealth, Cerner, drchrono, Epic, and McKesson.<\/p>\n\n\n\n<p>S4S pilot developers will implement a consistent, standards-based workflow, building on open specifications including <a href=\"https:\/\/www.hl7.org\/fhir\/\" target=\"_blank\" rel=\"noreferrer noopener\">Health Level 7&#8217;s Fast Healthcare Interoperability Resources (FHIR\u00ae)<\/a> and OAuth. Once developed and implemented, this functionality will allow individuals to connect a research app to their electronic health data, facilitating individual data donation for research and leveraging patients\u2019 access rights under the Health Insurance Portability and Accountability Act (HIPAA). The pilots will also collect information on individual participant preferences on alternative approaches for data donation.<\/p>\n\n\n\n<p><strong>Watch: President Obama on the Benefits of Precision Medicine<\/strong><br><iframe loading=\"lazy\" src=\"https:\/\/www.youtube-nocookie.com\/embed\/0FeQHlpIIXk?rel=0\" width=\"560\" height=\"315\" frameborder=\"0\" allowfullscreen=\"allowfullscreen\"><\/iframe><\/p>\n\n\n\n<p>The S4S pilot has two goals:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Develop methods to facilitate individually-controlled clinical data donations to the PMI Cohort. <\/strong>It is important that anyone in the U.S. be able to enroll in the PMI Cohort. This includes the ability to easily share clinical data in a structured electronic format that could eventually enable automated data updates over time.<\/li>\n\n\n\n<li><strong>Accelerate and guide the national ecosystem for patient-mediated data access through APIs. <\/strong>In Stage 3 of the Medicare and Medicaid EHR Incentive Programs, the Centers for Medicare and Medicaid Services (CMS) requires providers to offer application programming interfaces (APIs) allowing patients to access data via the application of their choice \u2013 giving patients more options to view, aggregate, and understand their health data. The S4S pilot will provide valuable insight into how this requirement can ultimately be implemented across the market.<\/li>\n<\/ul>\n\n\n\n<p>The initial focus of the S4S pilot will be a core data set that includes medications, problem lists, and demographics as defined in ONC\u2019s <a href=\"https:\/\/healthit.gov\/wp-content\/uploads\/2024\/11\/2015Ed_CCG_CCDS.pdf\" target=\"_blank\" rel=\"noreferrer noopener\">Common Clinical Data Set<\/a> definition. ONC and NIH expect that future phases of S4S will support methods for sharing other data elements.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"h-future-impact-of-the-s4s-pilot\"><strong>Future impact of the S4S pilot<\/strong><\/h2>\n\n\n\n<p>The potential value proposition for the APIs to be developed and lessons learned from the S4S Pilot could include:<\/p>\n\n\n\n<p><strong>Research Participants: <\/strong>An easier way of contributing to scientific progress and sharing medical records with researchers that doesn\u2019t require faxed forms, delays, or in-person visits.<\/p>\n\n\n\n<p><strong>Researchers:<\/strong> A simple path to receive research participants\u2019 basic clinical data, including essential details like lab results, vital signs, problem lists, medications, and immunizations, potentially increasing participation in studies. Data delivered in a structured format with standard vocabularies may also need less \u201ccleanup\u201d than typical EHR data.<\/p>\n\n\n\n<p><strong>Providers:<\/strong> A way to give patients access to the potential benefit from participating in research studies and a reduction in staff time to support data requests, as they flow automatically through our vendor-supplied patient portal.<\/p>\n\n\n\n<p><strong>EHR Vendors: <\/strong>A method to empower their health care provider customers, to facilitate research, to participate in the development of stronger health care systems, and to meet EHR Incentive Program requirements for API-based patient access.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"h-how-is-the-s4s-pilot-related-to-other-federal-and-community-driven-efforts-to-support-interoperability\"><strong>How is the S4S pilot related to other Federal and community-driven efforts to support interoperability?<\/strong><\/h2>\n\n\n\n<p>S4S will build on existing community standards and specification efforts (e.g., FHIR, SMART Health IT, Argonaut, CMS EHR Incentive Program) to support a key use case: giving patients an easy way to share their health data with researchers. This requires standards and specifications to support this use case, but the pilots aim <em>not to define new standards and specifications.<\/em> For this reason, the pilots will build on existing open community efforts.<\/p>\n\n\n\n<p>This work will align with ONC\u2019s strategy to <a href=\"https:\/\/healthit.gov\/blog\/interoperability\/investing-in-the-future-new-market-ready-user-friendly-health-technology-app-and-infrastructure-support\">connect and accelerate a FHIR ecosystem<\/a>, leveraging the growing interest in an industry-wide approach to open, standardized APIs in health care.<\/p>\n\n\n\n<p>Under the hood, the S4S Pilot will use <strong>HL7&#8217;s FHIR<\/strong> specifications for data models and a REST API and <strong>SMART Health IT<\/strong> OAuth profiles for security. Our initial scope of data access and the vocabularies we use are aligned with the <strong>Common Clinical Data Set<\/strong>. Many S4S vendors and providers are also participating in the <strong>Argonaut Project<\/strong>, which is an ecosystem-wide effort to support the implementation of these same open specifications. S4S will leverage the work conducted by Argonaut, so participating vendors will be able to leverage those efforts for S4S.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"h-how-can-i-get-involved\"><strong>How can I get involved?<\/strong><\/h2>\n\n\n\n<p><strong>EHR vendors:<\/strong> The easiest way to get up to speed is by joining Argonaut&#8217;s free, open <a href=\"https:\/\/argonautwiki.hl7.org\/index.php?title=Main_Page\/Implementation\" target=\"_blank\" rel=\"noreferrer noopener\">Implementation Program<\/a>. This program will guide you through the basics of supporting FHIR with SMART&#8217;s OAuth profiles. As the S4S pilot progresses, we&#8217;ll plan to <a href=\"https:\/\/github.com\/sync-for-science\/\" target=\"_blank\" rel=\"noreferrer noopener\">openly publish our UX guidelines<\/a>, sample code, and documentation for you to build on.<\/p>\n\n\n\n<p><strong>Health care providers<\/strong>: Check with your vendor to see whether they&#8217;re involved in S4S. If so, offer to be a pilot site. If not, encourage them to get involved!<\/p>\n","protected":false},"excerpt":{"rendered":"<p>S4S pilots are coming! On February 25, 2016, the National Institutes of Health (NIH), in [&hellip;]<\/p>\n","protected":false},"author":619,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_selected_menu":"","_show_breadcrumbs":"true","_blog_show_featured_image":false,"footnotes":""},"categories":[1],"archived-category":[708],"featured":[],"topics":[405,439,418,420,424,727],"class_list":["post-9546","post","type-post","status-publish","format-standard","hentry","category-insights-updates","archived-category-precision-medicine","topics-artificial-intelligence","topics-historical-programs","topics-interoperability","topics-interoperability-standards","topics-scientific-initiatives","topics-sync-for-science"],"acf":{"blog_authors":[{"blog_author_profiles":"198562"},{"blog_author_profiles":"198652"},{"blog_author_profiles":"198653"}],"hp_news_hide":false},"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v24.3 (Yoast SEO v24.8.1) - 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