Data Provenance Initiative Launch April 10 th, 2014 Joy Pritts, JD - Chief Privacy Officer, ONC Julie Chua PMP, CAP, CISSP - Information Security Specialist, ONC Office of the Chief Privacy Officer (OCPO) Johnathan Coleman, CISSP, CISM - Initiative Coordinator

Meeting Etiquette As a reminder all participants on this call are muted. If you want to ask questions or make comments please use the “Chat” feature on the web meeting Send your “chat” to All Panelists in order to ensure the comments are addressed publically From S&I Framework to Participants: Could you please explain how the terminologies are used in this instance? All Panelists To find the chat feature look for the chat bubble at the top of the meeting window 2

Opening Remarks −Julie Chua PMP, CAP, CISSP - Information Security Specialist, ONC −Joy Pritts, JD - Chief Privacy Officer, ONC The Standards & Interoperability Framework Initiative Introduction Next Steps/Call for Participation Support Team and Questions Agenda 3

Data Provenance Support Team Initiative Coordinator: Johnathan Coleman OCPO Sponsor: Julie Chua OST Sponsor: Mera Choi Subject Matter Experts: Kathleen Conner and Bob Yencha Support Team: – Project Management: Jamie Parker – Use Case Development: Presha Patel and Ahsin Azim – Harmonization: Rita Torkzadeh – Standards Development Support: Amanda Nash – Support: Lynette Elliott 4

OPENING REMARKS Julie Chua PMP, CAP, CISSP - Information Security Specialist, ONC Joy Pritts, JD - Chief Privacy Officer, ONC 5

The Standards & Interoperability Framework Johnathan Coleman - Initiative Coordinator 6

S&I Framework Overview Specific health interoperability initiatives guide the design and development of a fully integrated and connected health information system. An S&I Initiative focuses on a single challenge with a set of value-creating goals and outcomes, and the development of content, technical specifications and reusable tools and services. Call for Participation: The overall success of the S&I Framework is dependent upon volunteer experts from the healthcare industry and we welcome any interested party to get involved in S&I Framework Initiatives, participate in discussions and provide comments and feedback by joining the Wiki: 7

S&I Framework Coordination ONC Programs & Grantees Community S&I Framework FACAs SDOs State HIE Program & CoPs SHARP Program REC Program & CoPs Beacon Program Technology Vendors System Integrators Government Agencies Industry Associations Other Experts HL7 IHE CDISC NCPDP ASC X12 ASTM WEDI HIT Standards Committee HIT Policy Committee Tiger Team ISO/TC 215 IHTSDO NLM NQF Regenstrief Other health IT standards related organizations 8

ONC Standards and Interoperability (S&I) Framework Lifecycle Our Missions » Promote a sustainable ecosystem that drives increasing interoperability and standards adoption » Create a collaborative, coordinated, incremental standards process that is led by the industry in solving real world problems » Leverage “government as a platform” – provide tools, coordination, and harmonization that will support interested parties as they develop solutions to interoperability and standards adoption. Tools and Services Use Case Development and Functional Requirements Standards Development Support Standards Development Support Certification and Testing Harmonization of Core Concepts Implementation Specifications Pilot Demonstration Projects Reference Implementation Architecture Refinement and Management 9

S&I Framework Phases outlined for Data Provenance PhasePlanned Activities Pre-Discovery  Development of Initiative Synopsis  Development of Initiative Charter  Definition of Goals & Initiative Outcomes Discovery  Creation/Validation of Use Cases, User Stories & Functional Requirements  Identification of interoperability gaps, barriers, obstacles and costs  Review of Candidate Standards Implementation  Creation of aligned specification  Documentation of relevant specifications and reference implementations such as guides, design documents, etc.  Development of testing tools and reference implementation tools Pilot  Validation of aligned specifications, testing tools, and reference implementation tools  Revision of documentation and tools Evaluation  Measurement of initiative success against goals and outcomes  Identification of best practices and lessons learned from pilots for wider scale deployment  Identification of hard and soft policy tools that could be considered for wider scale deployments 10

INITIATIVE INTRODUCTION Data Provenance Initiative 11

What is Data Provenance? The term “provenance” refers to attributes about the origin of health information at the time it is first created and tracks the uses and permutations of the health information over its lifecycle. 12

The importance of Data Provenance As the exchange of health data increases, so does the demand to track the provenance of this data. Almost every S&I initiative to date has discussed “source data,” particularly as it involves patient generated health data. We will address the “source data” challenge so that trust in the authenticity of the data can help inform decision making. 13

Data Provenance Problems to Solve There is no existing authoritative specification, standard, or model for provenance that has been universally adopted within the context of Health Information Technology (HIT). Even current health information content standards, such as the CDA, lack guidance for handling data provenance. The variability in how HIEs, EHRs, and PHRs currently capture, retain, and display provenance is problematic for the interoperable exchange, integration, and interpretation of health data. 14

Real World Example Two different EHRs list provenance at varying levels of a CDA document which make it challenging for receiving HIE/EHR systems to determine provenance. EHR A wishes to produce a CDA to transmit to EHR B who will then transmit it to an HIE. EHR A (the sending EHR) specifies the custodial institution (holder of the record) in one part of the CDA and the responsible care providers (e.g. author, attestor) throughout the CDA. EHR B (the receiving EHR) can only process provenance information about the custodial institution. This variance creates challenges for downstream systems to obtain and specify accurate provenance information. Challenges to address EHR A and B differ in the detail that they provide about the specific providers. Provenance information may exist yet reside in different portions of the CDA document. EHR A HIE EHR B 15

Data Provenance Goals Improve the visibility of permutations of health information from creation to exchange, integration and use across multiple health information systems. Improve the confidence healthcare stakeholders have in the authenticity, reliability, and trustworthiness of shared data. 16

Initiative Approach To help achieve these goals, the initiative will: −Establish guidance for handling data provenance in the CDA standard including the level to which provenance can be applied −Establish a minimum set of provenance data elements and vocabulary bindings −Establish a Tiger Team to work with SDOs in support of the initiative, with the specific task of accelerating the standards analysis activity and providing recommendations back to the initiative 17

INITIATIVE LOGISTICS Data Provenance Initiative - Jamie Parker 18

Logistics All Announcements, Meeting Schedules, Agendas, Minutes, Reference Materials, Use Case, Project Charter and General Data Provenance information will be posted on the Data Provenance Wiki: Join us for our all-hands community meetings every week on Thursdays from 2:30pm to 3:30pm Eastern Time, beginning April 24th. These meetings take place by webinar and teleconference. 19

Data Provenance Wiki Page Data Provenance Wiki Page 20

Next Steps – Sign Up The ONC Data Provenance Initiative is open for anyone to join. We use Wiki pages to facilitate discussion. Information on how to join the Community can be found on the Data Provenance Sign Up Wiki: ative ative In order to ensure the success of our initiative and the subsequent pilot, we encourage broad and diverse participation from the community. This is your chance to have an impact on the creation and implementation of a pilot program in this important area of health IT development. 21

Details on the Data Provenance launch including this presentation are posted on the wiki: – iative iative Please feel to review and comment on the Proposed Project Charter – Join us for the first all-hands community meeting April 24 th, 2014 from 2:30pm – 3:30pm ET – All meeting updates, call in number and web meeting details can be found here: – Next Steps – Getting Started 22

Support Team and Questions Please feel free to reach out to any member of the Data Provenance Support Team: Initiative Coordinator: Johnathan Coleman: OCPO Sponsor: Julie Chua: OST Sponsor: Mera Choi: Subject Matter Experts: Kathleen Conner: and Bob Yencha: Support Team: – Project Management: Jamie Parker: – Use Case Development: Presha Patel: and Ahsin Azim: – Harmonization: Rita Torkzadeh: – Standards Development Support: Amanda Nash: – Support: Lynette Elliott: 23