data access framework (daf) phase 3 launch data access for research 1 september 9, 2015 s&i...
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Data Access Framework (DAF)Data Access Framework (DAF)Phase 3 LaunchPhase 3 Launch
Data Access for ResearchData Access for Research
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September 9, 2015S&I Initiative Coordinator: Johnathan ColemanHHS/ONC Sponsor: Mera Choi
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NOTE: This meeting is being recorded and will be archived on the DAF Wikipage, under “Materials” “Past Meetings”
NOTE: This meeting is being recorded and will be archived on the DAF Wikipage, under “Materials” “Past Meetings”
Meeting EtiquetteMeeting Etiquette
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Opening Remarks• Steven Posnack, M.S., M.H.S., Director, Office of Standards and Technology• Dr. Ed Hammond, PhD, FACMI, FAIMBE, FIMIA, FHL7, Director, Duke Center for
Health Informatics, Duke Translational Medicine Institute and ONC SDC Initiative Coordinator
• Johnathan Coleman, CISSP, CISM, CBRM, CRISC, S&I Framework Initiative Coordinator and ONC DAF Initiative Coordinator
Introduction to DAF Phase 3
Other DAF Related Activities
Next Steps/Call for Participation
Questions & Answers
Additional DAF Resources
AgendaAgenda
Opening Remarks Steven Posnack, M.S., M.H.S., Director, Office of Standards and Technology
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• Coordinates nationwide efforts to implement and use most advanced HIT and electronic exchange of health information
• Established by HITECH in 2009
Office of Standards and Technology (OST)Office of Standards and Technology (OST)
S&I Framework OverviewS&I Framework Overview The Standards and Interoperability (S&I)
Framework represents one investment and approach adopted by OST to fulfill its charge of prescribing health IT standards and specifications to support national health outcomes and healthcare priorities
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The S&I Framework consists of a collaborative community of participants from the public and private sectors who are focused on providing the tools, services and guidance to facilitate the functional exchange of health information
S&I Framework has produced, supported and enabled key standards and implementation guides used in Certification Criteria for Meaningful Use. Those include DIRECT Certificate and Provider Directory Services, Consolidated CDA used in Transitions of Care, Laboratory Results Reporting, and Quality Reporting Document
Active presence in Standards Development Organizations (SDOs) meetings to support and speed up process for S&I, including supporting the balloting of standards harmonized by S&I
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Value of S&I CollaborationValue of S&I Collaboration
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Collaborative ApproachCollaborative Approach
S&I Support Team + Pilot Community
S&I Support Team + Pilot Community + SDO
SDO
Engage with SDOs
Opening Remarks Dr. Ed Hammond, PhD, FACMI, FAIMBE, FIMIA, FHL7, Director, Duke Center for Health Informatics, Duke Translational Medicine Institute and ONC SDC Initiative Coordinator 9
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
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PCORIPCORI
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.
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PCORI PCORI CONTINUEDCONTINUED
Opening Remarks Johnathan Coleman, CISSP, CISM, CBRM, CRISC, S&I Framework Initiative Coordinator and ONC DAF Initiative Coordinator
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DAF Project TeamDAF Project Team ONC Sponsor: Mera Choi [email protected] S&I & DAF Initiative Coordinator: Johnathan Coleman [email protected] Support Team:
• Project Management: o Jamie Parker [email protected] o Gayathri Jayawardena [email protected]
• Technical SME: o Nagesh (Dragon) Bashyam [email protected]
• Standards SME:o Brett Marquard [email protected] o Ed Larsen [email protected]
• Privacy and Security SME:o Glen Marshall [email protected]
• Standards Development Support: o Angelique Cortez [email protected] 13
Introduction to DAF Phase 3
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DAF Initiative OverviewDAF 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
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DAF Initiative OverviewDAF Initiative Overview CONTINUEDCONTINUED
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)
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DAF Phase 3 ObjectiveDAF Phase 3 Objective
Enable researchers to access data from multiple organizations and data sources within a Learning Health System (LHS) infrastructure
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PCORI/PCORnet PCORI/PCORnet Abstract Abstract ModelModel
Step A: Creation of Data Marts within CDRN’s and PPRN’s•ETL’s are written to extract data from one or more data sources and loaded into a data mart to be queried by researchersStep 1, 2 ,3, 4: Researcher submitting a query and examining the query results1.Researcher composes a query to be submitted to various data marts (permissions and access controls determine who can query what data, at what time, and for what purpose)2.Queries are distributed to various sites depending on access controls, frequency, date, time, orchestration pattern, etc.3.Queries are executed and results computed on the data marts, optionally reviewed manually4.Query results are released by the networks to the researcher along with data disclosure policiesOut of Band Activities:•Network creation along with governing bodies such as IRB’s, on-boarding processes; data use agreements •Registering data marts and publishing metadata; approve queries for execution•Authorization policies allowing researchers (who, when, what purpose, what data) access to data
Researcher Interface
CDRN 1
PPRN
CDRN 2
Data Mart
Data Mart
Data Mart
Data Mart
Data Mart
Data Mart
Data Source 1 Data
Data Source 2 Data
Data Source 3 Data
Data Source 4 Data
Patient Generated Data
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DAF will develop the following technical capabilities to enable PCORI/PCORnet researchers to access data • Each capability will be driven by an overarching Charter/Challenge Statement/
Problem Statement/Functional Requirements Document• Each capability will be piloted by the DAF community prior to finalizing deliverables
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Proposed Technical Proposed Technical CapabilitiesCapabilities
Capability BenefitsAbstract Model
ReferencePilot Deliverable
C1: Standardize data extraction mechanism from clinical data sources
Reduces the onboarding time for data sources within each network
Step A • DAF Extract Transform Load (ETL) Technical Specification written by DAF support team based on pilot feedback
• Reuses all the work completed in DAF Phases 1 & 2
C2: Standardize metadata about data marts, data sources and networks
Provides researchers ability to determine which networks have the right data for their activities
Happens out of band
currently
• Proposal and content submitted to HL7 for new FHIR resources capturing the data mart metadata
C3: Standardize Query Distribution mechanism
LHS Data infrastructure not tied to a particular vendor or productAlso helps bridge multiple networks
Step 2 • Proposal and content submitted to HL7 for new FHIR resources to submit queries
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Capability Benefits Abstract Model Reference
Deliverables
C4: Standardize Query Results for aggregate data
LHS Data infrastructure not tied to a particular vendor or productCan be used for other use cases such as surveillance, quality reporting
Step 4 • Proposal and content submitted to HL7 for new FHIR resources capturing the query results data
• Proposal covers C4
C5: Standardize Query Results for de-identified and patient level data
LHS Data infrastructure not tied to a particular vendor or productCan be used for other use cases such as surveillance, quality reporting
Step 4 • Proposal and content submitted to HL7 for new FHIR resources capturing the query results data
• Proposal covers C5
C6: Standardize Query Structure
LHS Data infrastructure not tied to a particular vendor or product
Step 1 • DAF Support team Draft a “DAF Query Composition Technical Specification” based on pilot feedback
• Reuses existing FHIR Search capability
• Technical Specification Covers C6
Proposed Technical Proposed Technical Capabilities Capabilities CONTINUEDCONTINUED
Inter-Organizational Trust: • Data use agreements, compliance with privacy laws, authorization policies
related to data disclosure, governance, de-identification, etc.• Suitability of different technical mechanisms for authentication and
authorization to enable data access from an external organization Identity Matching:
• Policies, patient matching rules and matching algorithms to identify patients and their related clinical data over time and from multiple sources
Research Community Specific Considerations:• IRB requirements, constraints, and potential limitations for distributed
queries Patient-centered Considerations:
• Patient consent and data donation• Patient privacy and data disclosure
We will add and address additional policy considerations as Phase 3 evolves.
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Policy Considerations Policy Considerations
DAF will facilitate a process to help address policy issues as they arise and will be working with the Office of the Chief Privacy Officer (OCPO) and the DAF pilot community. Proposed activities may include:
• Capture policy decisions and identify technical standards currently used in PCORI/PCORnet environment for:
o Patient consent and data donationo Patient privacy and data disclosureo Patient matchingo Shared/centralized IRB methods
• Establish a workgroup to address DAF policy issues, which includes OCPO representation:
o Work closely with ONC OCPO led PCOR Privacy and Security Projects
o Seek OCPO assistance on any additional clarifications required beyond existing regulations, policies and guidance on above topics
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Proposed Policy ActivitiesProposed Policy Activities
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30 Sep 2015 31 Dec 2015 31 Mar 2016 30 June 2016 30 Sep 2016
WO
RKG
ROU
P 1:
C1 C
apab
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WO
RKG
ROU
P 1:
C1 C
apab
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Finalize scope and pilot kick-off
Execute Pilots
Draft IG and Submit to SDO for balloting
Finalize scope and pilots for C2 thru C4
Execute Pilots for C2 thru C4
Draft Proposals, IG’s and Submit to SDO for balloting C2 thru C4
Finalize scope and pilots for C5, C6
Execute Pilots for C5, C6
Draft Proposals, IG’s and Submit to SDO for balloting C5, C6
31 Dec 2016
Proposed TimelineProposed TimelineW
ORK
GRO
UP
2:C2
-C6
Capa
biliti
es
WO
RKG
ROU
P 2:
C2-C
6 Ca
pabi
lities
Other DAF Related Activities
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HL7: DAF FHIR IG DAF FHIR DSTU IG ballot reconciliations have concluded and received sufficient affirmative votes to pass ballot and will move to publication. You can review the ballot here: http://hl7.org/fhir/2015May/daf.html
Implementation of reconciled comments disposition actions have been completed and publication is anticipated late September 2015, in accordance with the FHIR DSTU2 release
The sponsoring work group for the DAF FHIR DSTU IG, Infrastructure and Messaging (InM), meeting artifacts can be found here: http://www.hl7.org/Special/committees/inm/index.cfm
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Other DAF Related Activities Other DAF Related Activities
Ongoing SDO ActivitiesOngoing SDO Activities
IHE: DAF Document Metadata IG IHE USA and IHE Patient Care Coordination (PCC) domain have approved the Data Access Framework Document Metadata Based Access Implementation Guide to move to trial implementation text publication
• The target for final publication is the second week of September 2015
The DAF Document Metadata IG will be available for testing at the IHE NA Connectathon 2016 at the HIMSS Innovation Center in Cleveland OH, January 25- 29, 2016
• http://www.iheusa.org/connectathon-registration.aspx
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Other DAF Related Activities Other DAF Related Activities
Ongoing SDO Activities Ongoing SDO Activities CONTINUEDCONTINUED
Purpose: Harmonize and develop a set of privacy and security specifications that enable an individual to control the authorization of access to RESTful health-related data sharing APIs, and to facilitate the development of interoperable implementations of these specifications by others• The HEART WG is run under the auspices of OpenID, not ONC. Requires
intellectual property release (IPR) to participate• References OpenID, OAuth 2.0, and UMA 1.0 specifications
Has completed use-case for PHR-EHR communication, using Oauth 2.0. • This work is to be aligned with HL7 FHIR, SMART, and Argonaut
Artifacts: http://openid.net/wg/heart/
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Other DAF Related Activities Other DAF Related Activities
HEART WorkgroupHEART Workgroup
Purpose: Develop a first-generation FHIR-based API and Core Data Services specification to: • enable expanded information sharing for electronic health records and other
health information technology based on Internet standards and architectural patterns and styles
The project will accelerate current FHIR development efforts to provide practical and focused FHIR profiles and implementation guides to the industry.
Artifacts: http://argonautwiki.hl7.org/index.php?title=Main_Page
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Other DAF Related Activities Other DAF Related Activities
Argonaut Workgroup Argonaut Workgroup
Next Steps/Call for Participation
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NEXT MEETING: Join us on Wednesday, September 23, 2015 at 12:00 PM (ET) for our next meeting. • Agenda: We will review the proposed project charter for Phase 3• Webinar details: http://wiki.siframework.org/Data+Access+Framework+Homepage
SUBSCRIBE TO DAF: Please visit the “Join the Initiative” section of the DAF wikipage to subscribe to our listserv: http://wiki.siframework.org/Data+Access+Framework+Join+the+Initiative
BECOME A PILOT: If you are interested in becoming a pilot site for DAF Phase 3, please complete the sign-up form located here: https://docs.google.com/forms/d/1Yj2HgFNy_wF2LJOc_WiFkDboW4Qwzuyi7zHPJgOMvjI/viewform
DAF WIKI HOMEPAGE: The ONC DAF Initiative is open for anyone to join! Please visit the DAF wikipage to access all our meeting calendars, past meeting materials, initiative charter, Phase 1 and 2 artifacts as well as our current work activities: http://wiki.siframework.org/Data+Access+Framework+Homepage
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Next Steps/Call for ParticipationNext Steps/Call for Participation
A recording of today’s webinar and slide presentation will be available shortly after this call
To access these meeting artifacts, please visit: http://wiki.siframework.org/Data+Access+Framework+Meeting+Artifacts
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Next StepsNext Steps
Questions Questions
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Additional DAF Resources
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Useful LinksUseful Links• DAF Homepage
– http://wiki.siframework.org/Data+Access+Framework+Homepage• DAF Initiative Signup
– http://wiki.siframework.org/Data+Access+Framework+Join+the+Initiative• DAF Charter
– http://wiki.siframework.org/Data+Access+Framework+Charter+and+Members• DAF Standards, Harmonization and Implementation Activities
– http://wiki.siframework.org/DAF+Standards+Harmonization+and+Implementation
• DAF HL7 FHIR IG– http://hl7.org/fhir/2015May/daf.html
• DAF IHE White Paper– http://ihe.net/uploadedFiles/Documents/PCC/
IHE_PCC_White_Paper_DAF_Rev1.1_2014-10-24.pdf
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DAF Project TeamDAF Project Team ONC Sponsor: Mera Choi [email protected] S&I & DAF Initiative Coordinator: Johnathan Coleman [email protected] Support Team:
• Project Management: o Jamie Parker [email protected] o Gayathri Jayawardena [email protected]
• Technical SME: o Nagesh (Dragon) Bashyam [email protected]
• Standards SME:o Brett Marquard [email protected] o Ed Larsen [email protected]
• Privacy and Security SME:o Glen Marshall [email protected]
• Standards Development Support: o Angelique Cortez [email protected] 35