Data Access Framework All Hands Community Meeting 1 September 23, 2015

2 If you are not speaking, please keep your phone on mute DO NOT place your phone on hold, if you need to take another call or step away, please hang up and dial in again Hold = Elevator Music = Frustrated Speakers and Participants Feel free to use the “Chat” feature for any questions, comments or any items you would like the moderator or participants to know Meeting Etiquette NOTE: This meeting is being recorded and will be archived on the DAF Wikipage, under “Materials”  “Past Meetings” From S&I Framework to Participants: Hi everyone: remember to keep your phone on mute

3 Agenda TopicEstimated Time General Announcements5 minutes Recap of DAF Phase 3-Data Access for Research5 minutes Review Draft Phase 3 Charter45 minutes Next Steps & Questions5 minutes

4 General Announcements  DAF Listserv If you would like to receive the latest updates and announcements from the S&I DAF Initiative, please visit the “Join the Initiative” section of the DAF wikipage and subscribe to our listserv:  DAF All Hands Community Meeting The DAF All Hands Community meeting will be cancelled on Wednesday, October 7, 2015 due to the HL7 workgroup meeting We will resume our All Hands meeting on Wednesday, October 21, 2015 at 12:00 PM (ET). The meeting details can be accessed on the homepage:  DAF Wikipage Please visit the DAF wikipage at any time to access all our updates, meeting calendars, past meeting materials, initiative charter, Phase 1 and 2 artifacts and current work activities:

5 DAF Initiative Overview  Goal: The Data Access Framework (DAF) Initiative aims to increase access to patient data, using standards for data queries, APIs, or services, in order to expand the ability of users to create value out of their data without having to rely on existing access paths based on clinical workflow events  Benefit: Standards based access can enable a provider to further analyze the collected data to understand a patient’s overall health, the health of a provider’s collective patient population, and use the data with innovative new applications and tools to improve care for patients and populations This will improve patient care across the continuum and provide the capability to analyze and use patient data collected in the care process to improve population health

6 DAF Initiative Overview CONTINUED  DAF has approached standardized data access in three phases: Phase 1: Local Data Access within an organization (Intra-Organizational Query) Phase 2: Targeted Data Access with a known organization (Inter-Organizational Query) Phase 3: Distributed Data Access across multiple organizations (Distributed/Federated Query)

7 Path to Success Create Problem Statement & Functional Requirements Conduct Pilots Finalize/Select Technical Solution from Pilots sent to SDO(s) Create/Update /Publish Standards or IG using SDO Processes & Resources (based of finalized pilot solution) S&I Support Team + Pilot Community S&I Support Team + Pilot Community + SDO SDO Engage with SDOs

8 DAF Phase 3 Objective  Enable researchers to access data from multiple organizations and data sources within a Learning Health System (LHS) infrastructure

DAF Phase 3 Charter Review 9

 NEXT MEETING: Join us on Wednesday, October 21, 2015 at 12:00 PM (ET) for our next meeting where we will review and finalize the proposed project charter for Phase 3  BECOME A PILOT: If you are interested in becoming a pilot site for DAF Phase 3, please complete the sign-up form located here: HPJgOMvjI/viewform HPJgOMvjI/viewform 10 Next Steps

Questions 11

Additional DAF Resources 12

Useful Links DAF Homepage – DAF Initiative Signup – DAF Charter – DAF Standards, Harmonization and Implementation Activities – tion tion DAF HL7 FHIR IG – DAF IHE White Paper – ev1.1_ pdf ev1.1_ pdf 13

DAF Project Team  ONC Sponsor: Mera Choi  S&I & DAF Initiative Coordinator: Johnathan Coleman  Support Team: Project Management: o Jamie Parker o Gayathri Jayawardena Technical SME: o Nagesh (Dragon) Bashyam Standards SME: o Brett Marquard o Ed Larsen Privacy and Security SME: o Glen Marshall Standards Development Support: o Angelique Cortez 14

Appendix A DAF Phase 3 Background 15

 The Patient-Centered Outcomes Research Institute (PCORI) is an independent nonprofit, nongovernmental organization located in Washington, DC, which was authorized by Congress in 2010 to improve the quality and relevance of evidence available to help patients, caregivers, clinicians, employers, insurers, and policy makers make informed health decisions  Phase 3 of DAF will enable researchers to use standardized technical capabilities to access data from multiple organizations and data sources within a Learning Health System (LHS) infrastructure. Ongoing LHS activities include researchers accessing data under the current PCORI and the National Patient- Centered Clinical Research Network (PCORnet) grant activities 16 PCORI

 Under the PCORI and PCORnet environment is an expansive set of health systems who are partnered to conduct research as a network, known as the Clinical Data Research Networks (CDRNs) and the Patient-Powered Research Networks (PPRNs). Both of these research networks collect data from multiple sources and makes them available for research along with a governing Institutional Review Board (IRB) that helps to address various policy issues surrounding consent, data use, data release, anonymization, security and privacy, etc. 17 PCORI CONTINUED