National Center for Health Statistics NCHS Vital Records

National Center for Health Statistics (NCHS) Vital Records Birth and Fetal Death Reporting FHIR Implementation Guide June 8, 2020 © 2019 Lantana Consulting Group / www. lantanagroup. com

Agenda • • • Introductions Project Introduction Purpose/Scope Key Dates/High-Level Schedule State Collaboration on Requirements and Analysis

CDC/NCHS Team Hetty Khan • Technical POC • Email: hkhan@cdc. gov Cindy Bush • Technical POC • Email: pdz 1@cdc. gov Vital Records SMEs • • Alaina Gregory* agj 7@cdc. gov Joyce Martin (Birth SME) jcm 9@cdc. gov Kate Brett^ kmb 5@cdc. gov Prachi Mehta^ pnm 9@cdc. gov *V 2. 6 and VR DAM for Vitals Records SME ^Manage contract with states and know status in terms of systems and development Additional Vital Records SMEs to join calls as requested by Hetty & Cindy • David Justice (Birth SME) • Kryn Krautheim (Birth – demographics SME) • Donna Hoyert (Fetal Death SME) 3

Lantana Team Wendy Wise • • Project Manager wendy. wise@lantanagroup. com 614 -314 -2626 Columbus, OH (Eastern Time) Sarah Gaunt • • Lead Analyst sarah. gaunt@lantanagroup. com +61 410 292 506 Brisbane, Australia (Australian EST) Dave de. Roode • Analyst • David. deroode@lantanagroup. com • Denver, CO (Mountain Time) 4 Other Team Members • • Andrew Laing (SME) Diana Wright (Tech Editor) Lori Reed-Fourquet (SME) Max Nakamura (QA Engineer) Rick Geimer (FHIR SME) Sean Mc. Ilvenna (Software Architect) Sherry Mc. Afee (Financial Analyst) Zabrina Gonzaga (Clinical & EHR SME)

Georgia Team Chris Harrison • State Registrar, Deputy Director, Data Integrity & Analytics Karl Soetebier • Director, Office of Public Health Informatics Eric Trinh • 5 Genesis, Software Engineer

Michigan Team Jeff Duncan • State Registrar and Director Michael Yaskanin • 6 Altarum, Project Manager

Utah Team Kailah Davis • Director for Health Informatics Office Valli Chidambaram • Senior Health Informaticist Zak Guler • Software Engineer Terry Lucherini Linda Wininger 7

Project Introduction • Vital records birth certificates and fetal death reports (BFDR) include demographic, medical, and other key information about the antepartum period, the labor and delivery process, and factors leading to adverse pregnancy outcome. • Public health agencies target interventions for at-risk populations by tracking maternal and infant health information through electronic health record (EHR) systems, birth certificates, and fetal death report data (both cause of fetal death and non-cause of fetal death data). • BFDR implementation guides (IG) have been published as both HL 7 Version 2. 6 (V 2) & Clinical Document Architecture (CDA) for electronic reporting of medical/health information about live births and fetal deaths from a birthing facility to a jurisdictional vital records electronic registration system, and for two-way electronic exchange of data between jurisdictions and the NCHS 8

Purpose/Scope • Create a FHIR R 4 BFDR IG standard for facilities, public health jurisdictions, and NCHS to electronically exchange birth and fetal death information • Include the content of medical/health information on live births and fetal deaths for select state and federal birth and fetal death reporting (2003 Revision of the U. S. Standard Certificate of Live Birth and the U. S. Standard Report of Fetal Death) • Assess additional state specific content that is exchanged between EHRs and jurisdictions • The workflow to be tested is EHR to state for birth and fetal cause and noncause of death data. 9

Scope (continued) The FHIR IG development work will be informed by and aligned with: • • BFDR V 2 IG BFDR CDA IG Vital Records Death Reporting (VRDR) FHIR IG IHE BFDR-e Use definitions from United States Core for Data Interoperability (USCDI) • US Core FHIR Profiles 10

Key Dates/High-Level Schedule Leading into September Virtual Connectathon • Develop BFDR HL 7 FHIR IG - Gather Requirements and Analysis (current) § Informed by stakeholder feedback/collaboration to meet real-world requirements - Develop Connectathon-ready FHIR IG (Summer 2020) - Test FHIR IG at HL 7 FHIR Virtual Connectathon (Weds, Sept 9 – Friday, Sept 11, 2020) § Define Connectathon goals and objectives Following the Connectathon • Revise & Ballot BFDR FHIR IG • • Revise the BFDR FHIR IG based on Connectathon results Submit the revised BFDR FHIR IG for the January 2021 HL 7 Ballot cycle • Ballot Reconciliation • Review and address ballot comments • IG Publication • • 11 Update the IG based on the approved ballot comments Publish the updated IG (STU)

State Collaboration on Requirements and Analysis • High-level information on FHIR implementation/capabilities - FHIR Version(s) § Georgia – FHIR not in use, but tested at connectathons with Epic & Cerner, Genesis interoperability module, Can support: STU 2 – R 4 (Cerner STU 2? Epic? ) § Utah – unknown - Argonaut/US Core § Georgia – US Core for death profiles (VRDR - decedent) FHIR R 4 § Utah – limited to US Core for death profile (VRDR - decedent); FHIR R 4 server that exposes database elements to share internally § Michigan – no fhir in use, testing at several connectathons, VRDR FHIR R 4, piloting with NCHS • Requirements based on: - Standard Certificate of Live Birth - U. S. Standard Report of Fetal Death • Work through the data elements represented on each of these forms - gather feedback on: § current availability of data (US Core? ) § future availability of data § roadblocks to obtaining data § impacts of add functionality to obtain data 12 § other insights

Main Participants and Related Encounters • Main participants: - 13 Newborn (live birth) Fetus (fetal death) Mother (live birth & fetal death) Father (live birth & fetal death)

FHIR Mother / Newborn Relationships • During Maternity Encounter Patient (mother) Encounter (mother). subject = Patient (mother) • • • After Birth (multiple births = multiple patients/encounters) Patient (newborn x) • - multiple birth -> multiple Patient (newborn x). multiple. Birth. Integer = x (if multiple birth) Encounter (newborn x). subject = Patient (newborn x) • • - multiple birth -> multiple Encounter (newborn x). part. Of = Encounter (mother) Related. Person (mother). patient = Patient (newborn x) • • - multiple birth -> multiple Related. Person (mother) – each with different patient (newborn) Related. Person (mother). relationship = NMTH (natural mother) Patient (mother). link = Related. Person (mother) • • - can have multiple links Not many EMRs support Encounter. part. Of (especially older versions) Related. Person? (SMART on FHIR) – can’t search for mum based on baby, Messaging – do not create new record for fetal death 14

Linking – Possible? • Find babies of mother based on mother’s patient id: • • • Patient (mother). link[1. . x] -> Related. Person (mother)[1. . x]. patient Related. Person. patient where Related. Person. identifier = xyz Encounter (newborn x). part. Of. Encounter. subject where Encounter (mother). subject. Patient. identifier = xyz Baby would already have an identifier – needed when baby is registered Can pick either in app Timing – launching the app (baby in system, already has identifier) Multiple births – how do you differentiate. Better to start with baby id Bundle vs query Epic – mom id + baby id – had to give both (maybe linking not possible) Baby id is better than mother id Patient – contains id of mother (in db) Check VR DAM 15