1. _ Update Seth Blumenthal, MBA Director, Data & Innovation PCPI
Surgical Quality Alliance
Washington, D.C.
April 24, 2018

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What is Registries on FHIR?
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Existing data standards
Domain analysis model
Input from clinical content experts
Implementation guide
What is the goal of Registries on FHIR?
Registry
So that…
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Will contain clinical content
Specified in a computable format
So database engineers can
Implement in registries, EHRs and
Other clinical systems
FHIR implementation guide containing common data elements
Question:
What is a common data element?
What is the end product of Registries on FHIR?
Question:
What do we feel this will accomplish?
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2017
Published Common Clinical Registry Framework
Domain analysis model through HL7
Launched NQRN Interoperability WG with co-chairs
Drs. Doug Fridsma, Frank Opelka
Completed information-gathering campaign to identify
Registry interoperability needs.*
2018
Developed draft CDE spec, beginning with ONC 2015 CCDS and in collaboration with MDEpiNet
Secured Pew contract with DCRI/PCPI
Conducted working session at PCPI Spring conference
Work to date
*AMIA 2018 Informatics Summit proceedings
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Output from three breakout sessions
Clinical content
Multiplicity of standards with ever-changing models
Disconnect between registry developer, eCQMs, EHRs
Session attendees provided feedback to help refine common data elements pertinent to registries, and CDE metadata
Collecting current case forms in Pew-funded study
March 19, 2018 working PCPI
Notable discussions on individual elements:
Patient name – need unique identifier and specific format (Cures act)
Birth sex – may also need gender
DOB – time? Gestational age?
Preferred language – drop this
Race – CDC standard short list is the convention in registries
Smoking status – needs additional work
Lab tests – don’t separate values and results
Vital signs – BMI? Methods/devices?
Meds – is class needed? Context?
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Output from three breakout sessions
Implementation
Common Clinical Registry Framework project
Registry FHIR specification project (to be launched)
Registry FHIR demonstration project (to be launched)
CDEs -> logical information models: The Clinical Information Interoperability Council
March 19, 2018 working PCPI
Major implementation factors discussed:
Stakeholder impact – registry stewards, registry vendors, EHR vendors, registry participants and users
Process workflow – source data collection, data submission preparation, registry data submission
Data quality - completeness, accuracy, Timeliness, Validity, and Consistency
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Output from three breakout sessions
Marketing & Governance
PCPI not creating additional governance structures
Will use HL7 and CIIC for governance
PCPI will help with marketing
March 19, 2018 working PCPI
Major dimensions discussed:
Priority audiences – registries, health systems, users, vendors, payers, regulators
Value Proposition – lower participation costs, increased analytic power across data silos. Study this – get cost estimates, demonstrate potential through pilot, burden, assess ability to correlate data across registries
Marketing Activities - collateral
Governance – through CIIC
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Metadata for each concept
Category
Term/ Attribute Name
Attribute Definition
Data Type
FHIR
Coded value or Value Set
References
Data element concepts
Lab tests
Lab results
Vital Signs Panel
Respiratory rate
Heart rate Oxygen saturation in Arterial blood by Pulse oximetry
Body temperature
Body height
Body length
Head circumference
Body weight
Body mass index
Blood pressure systolic and diastolic
Systolic blood pressure
Diastolic blood pressure
Procedures
Care team members
Immunizations
Device identifier
Assessment and plan of treatment
Goals
Clinical notes
Provenance
Format: Excel spreadsheet
Draft common clinical data set
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Rest of 2018
Continue to refine common clinical dataset with feedback from working session
Pilot the dataset in registries and source data systems
Study current variance in registry data models with regard to these data elements, and look at impact of the pilot on things like need for custom interfacing, chart abstraction, data quality
Submit study results for publication
Update the domain analysis model and develop the FHIR implementation guide for these data elements
2019 and beyond
Push for adoption in NQRN registries
Use lessons learned to look for next opportunities
Next Steps
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