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National Health Data Dictionaries (NHDDs)

An Emerging Framework for Implementing Health Data Standards

Jul-2023

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Previously…

May 2021 - Three Shiriki webinars on Concept Dictionary (CD) management and governance

Cross-country Collaborations around CD Governance

03

Identifying partnerships, roles, and resources to improve CD governance and terminology management

Current State of CD implementation

02

Lessons learned
Demonstration: using CIEL in OpenMRS CDs
Challenges faced by countries in establishing concept management and governance

CD Overview with OpenMRS Community

01

Conceptual overview
Pitfalls and challenges in CD implementation
Efforts to address challenges + opportunities for collaboration

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NHDD Unconference Session

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20+ Countries talking about NHDD and Terminology at OHIE23

Insight: Concept Dictionaries are a common starting point for National Health Data Dictionaries

Kenya

Zambia

Cote d'Ivoire

Ethiopia

Sri Lanka

Malawi

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Global Terminology Service Progress

1 - Present in the strategy document

Nepal

Uganda

2 - Being planned, designed, developed

Botswana

Ethiopia

Haiti

Zimbabwe

Nigeria*

Indonesia*

3 - Deployed in limited scope or region

Cote d'Ivoire

Malawi

Rwanda

Sri Lanka

Kenya*

Source: OHIE23 Component Survey (self-reported)

4 - Component is nationally deployed

--

* No Component Survey taken at OHIE23 - reported by partners instead

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How to implement a NHDD the Gov can take over?

How does data privacy / security fit into terminology work?

Realignment of local terminologies to global standards

Sustainability concerns: content, translation, maintaining this digital health artifact

ICD-11 tooling complications

Where do we start from if we want to leverage OCL to expedite the mapping process? Mapping takes time.

How to make pharmaceutical terminologies / information visible to all health systems?

Integrating and aligning with other software like DHIS2

Summary of challenges: Mapping | NHDD/Governance | OCL/Tooling | Data Exchange

Use Case Examples for NHDDs

Malawi: National

Product Catalog

Sri Lanka:

National EHR

Cote d'Ivoire: Lab interoperability from OpenMRS to OpenELIS

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What did we learn?

NHDDs on the rise!

More and more countries are wanting to do more with terminology: subset, publish, endorse, etc.
NHDDs (or similar nationally-endorsed concept dictionaries) are gaining popularity!

Primary use case: Care provision and integrating with EHR (5+ countries reported)

Other use cases of note: Lab integration, Reporting / M&E, managing supplies/drugs
Next step: build out technical use cases e.g. national data warehouse submission using NHDD metadata

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Where is this going?

As standards become more adopted globally, there will be publication of standards from various groups, such as:

Countries
Standards Development Organizations (SDOs)
Philanthropic organizations e.g. WHO or PEPFAR

How will we coordinate and align our respective standard content?

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Today’s Panel

Jonathan Payne

Director, Open Concept Lab (OCL)

Andrew Kanter

Director, Columbia International eHealth Lab (CIEL)

Steven Wanyee

Founder, CEO, and Director of Biomedical and Health Informatics (Digital Health) of IntelliSOFT Consulting

Joe Amlung (Moderator)

Technical Advisor, Regenstrief Institute

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An Introduction to the �NHDD Framework

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The terminology management maturity model charts a pathway to more advanced – and more impactful – uses of terminology

Terminology Services�Maturity Model

Nascent

Emerging

Shared Electronic Reference

Digital Subscription

Data Exchange

Key information systems electronically subscribing to the central service to stay up-to-date and use harmonized standards to support semantic interoperability

No centrally defined content or governance

Some centrally defined content published in non-standard formats, with limited adoption and governance

Up-to-date definitions aligned across key programs, in which users consistently refer to the shared electronic reference

Terminology service used to automate information exchange between systems, leveraging advanced functionality (code validation, value set expansions, etc.) to advance a health system’s strategic goals, such as improvement and measurement of quality, safety, and outcomes

Many LMICs are at the early stages of adopting standardized terminology
The climb from “Emerging” to “Shared Electronic Reference” maturity level can be steep, requiring a different way of doing business (eg. capacity, biz processes, governance, …)

Emphasis on selection and definition of data standards, establishing governance and implementing foundational systems (e.g. eHealth architecture)

Emphasis on use of terminologies to support data exchange.

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An NHDD initiative consists of governance, content, and software

National Health Data Dictionary

A centralized source for a health system’s data standards and definitions that provides a common language and framework for exchanging and sharing health information between different healthcare providers, facilities, and systems.
A country’s health information exchange uses these definitions and mappings to normalize clinical data and achieve consistent aggregation and reporting

Software

A terminology service used to publish and manage content and to provide standards-based terminology transactions to a health data exchange

Governance

Policies and leadership to promote and enforce adoption and maintenance of the NHDD.

An NHDD is typically managed by a national health authority or other appointed governing body.

Country-level Content

Codes, terminology subsets/ extensions, value sets, mappings, and related metadata for use in the country’s health system (e.g. concept dictionary)

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NHDD Framework: Software

A Terminology Service provides terminology resources to a health information exchange architecture (HIE)

A Terminology Service sits in the “Registry Services” layer of the HIE – components that provide metadata that are used by other Health Exchange components
Definitions and mappings that are published to the Terminology Service are made available to the HIE
The OpenHIE Architecture Specification defines the behavior of a Terminology Service in an HIE
An NHDD also needs software to support the authoring and updating of terminology resources – this may be separate or bundled with the TS

OpenHIE Architecture Diagram

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A Terminology Service enables standards-based workflows in an eHealth architecture

Examples of workflows supported by a terminology service:

Query Code System: Is SNOMED CT or ICD-10 available?
Code Validation: Is Code ‘123456789’ in SNOMED CT?
Code Translation: What is the LOINC code for clinic A’s ‘CBC’ code?
Value Set (Subset) Query: Is the Maternal Health Value Set available?
Value Set Resolution: Return the contents of Maternal Health Value Set.

See the full list of workflows and functional requirements for a Terminology Service in the OpenHIE Architecture Specification v5.0: https://guides.ohie.org/arch-spec/openhie-component-specifications-1/openhie-terminology-service-ts

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NHDD Framework: Content

What terminology content should a country publish in its NHDD?

NHDDs often begin with an established organization-level dictionary that is being leveraged as a starting point for data harmonization nationally (e.g. KenyaEMR)
Reference vocabularies and interface terminologies offer multiple options for modeling a concept – e.g. different levels of granularity, diagnosis vs. yes/no question, etc.

A health system wants to be opinionated on which models are “understood” in the HIE to support normalization

Normalization is required for data that is reported to the HIE, e.g. cleaning data before it is submitted to a national data warehouse
What about data that is not reported to the HIE?

The NHDD should provide guidance to ease future interoperability

Preferred terminologies: “First look in CIEL, then SNOMED CT…”
Data model: “Diagnoses should not be modeled as yes/no questions”

The NHDD must be responsive to what organizations are actually doing in practice

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NHDD Framework: Content

Hierarchical terminology implementation uses international standards customized appropriately for use

Responsive Local & National Governance

Submissions /�Feedback to Standards

International standards are selected/ customized for country use, where they are further adapted for local implementation

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NHDD Framework: Content

Dictionary B

SNOMED

ICD

LOINC

etc.

Country subsets of curated concepts, �local customizations, & centrally managed mappings

Dictionary A

Organization-Level Dictionaries & Customizations

Country-Level Subsets & Customizations

Interface Terminology (e.g. CIEL, IMO)

Curated/published concepts source �(e.g. interface terminology)

Reference / Administrative Code Sets

maps to

subsets, maps & aligns to

etc.

subsets

Application A

Application B

Point of Service (POS) Applications

aligns with

National Data Repository

HIE

(Uses NHDD to normalize reported data)

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NHDD Framework: Governance

An governance framework is essential to guide adoption and maintenance of the NHDD

Considerations for an NHDD governance framework:

Who is the nationally designated authority that manages the NHDD? What expertise are required and what are its responsibilities?

e.g. selection, endorsement, management and customization of standard terminologies

How is the terminology service maintained and what use cases are supported? (e.g. normalization of data reported to national data warehouse)
How is use of the NHDD incentivized and enforced?
What guidance and support is available to users of the NHDD?
How does the NHDD expand/evolve to meet the changing needs of its users?

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*DRAFT* Terminology Management Capability Assessment

Maturity Level	Content	Governance	Use
Emerging	Are there some agreed upon health data standards and codes, e.g. clinical diagnoses, used across the health system? Are codes available for download and distribution in electronic formats (e.g. PDF, spreadsheet, etc.)?	Do you have a plan/strategy for the specification and use of standard terminologies?	Does your country/organization/partners currently require the use of specific terminologies within your health system?
Shared Electronic Reference	Do key programs and systems share common definitions for at least a few priority content areas (e.g. national indicators, disease codes, drugs list)? Do you have a central location to access/download all/most standard terminologies used across the health system?	Is there a designated Standards Leadership Group that is responsible for the selection, endorsement, management and customization of standard terminologies?	Do guidelines and systems consistently refer stakeholders to a central electronic reference to view up-to-date for selected terminologies?
Digital Subscription	Do a large proportion of programs and systems share definitions for major content areas? Are health data standards centralized for all/most key domains accessible in a central location and in a harmonized structured format?	Do you have a governance framework and processes to guide the selection, management and customization of standard terminologies?	Do key information systems use shared service(s) to stay up-to-date with selected terminologies in an automated/semi-automated manner?
Data Exchange	Are all official health terminologies used within the health system available via shared, formally designated, and standards-based services?	Is the selection, management, and customization of standard terminologies consistently applying a formally adopted governance framework with broad stakeholder buy-in and supporting health system priorities?	Do you use a standards-based terminology service loaded with selected terminologies to facilitate automated data exchange within your health information architecture?

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Interface Terminology �Perspective

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Hierarchical implementation uses international�standards customized appropriately for use

Governance:

Local and National

Submissions/Feedback to Standards

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Interface terminology provides clinically-friendly names

Interface Terminology (e.g. CIEL, IMO)

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While also ensuring maps to multiple standard codes

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Country-Level Dictionary Harmonization/Subsetting

Develop, publish, and maintain a nationally harmonized concept dictionary to provision terminologies for local EMR implementations that will serve as the foundation for an emerging National Health Data Dictionary (NHDD) that enables a variety of data exchange needs within a country’s health information architecture.

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As an example of bottom-up input, separate and disparate concept dictionaries usually are present at the start

AMPATH OpenMRS (AMRS)

KenyaEMR

750 concepts

900 concepts

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Initially, consolidate concepts where appropriate to ensure consistency

Provides visibility to unique use cases and methods

KenyaEMR

50 unique concepts

AMPATH OpenMRS (AMRS)

200 unique concepts

700 shared concepts

Common concepts and strategic concepts could be included in NHDD

Locally-governed dictionary that meets unique needs but is built from international standards and are in sync with NHDD

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Example of top-down input: Countries can select preferred concept modeling: ex. Diabetes Mellitus from multiple options

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Drawing from curated, centralized dictionaries ensures interoperability of semantics (standard codes and modeling)

Local use cases may drive selection of new concepts from standard sources. These then can be proposed for elevation to NHDD for shared use.

50K+ concepts

~30K concepts

~15K concepts

~10K concepts

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Long-term Goal: Centrally governed dictionary with many contributors

KenyaEMR

50 unique concepts

AMPATH OpenMRS (AMRS)

200 unique concepts

Other systems i.e.

AfyaKE, Kenya Bahmni, OHRI)

100 unique concepts

Centrally-governed dictionary

Locally-governed dictionary that meets unique needs but is built from international standards and are in sync with NHDD

750 shared concepts

1000 non-shared

concepts

1000 non-shared

concepts

Organizational dictionaries can add by selecting from NHDD

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Always choosing from approved source ensures consistency of mappings to standards

1000 non-shared

concepts

750 shared concepts

Standard interface terminology (CIEL)

Very few concepts are not part of the interface terminology

1000 non-shared

concepts

Non-shared concepts can become shared

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Summary

NHDDs can be based on shared standards like CIEL which provides curated maps to reference and administrative codes. Where interface terminology is not available (perhaps certain domains, like medical supplies) reference/admin codes can be used.

Start from top-down (selecting from the source dictionaries) and bottom-up (normalizing concepts already used in practice). Governance and decision-making about which concepts to use is essential.

Organizations and projects should select from the NHDD when creating their dictionaries so their data will be easily interoperable with the national information system.

Changing requirements (new concepts) should be selected using international standards and should be considered for addition to the NHDD, not just added to the application.

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Country Perspective

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Experience from Kenya

Effective expression and demonstration of Value Proposition early in the intervention is critical
Transparent, comprehensive & competent review and selection of technology solutions to power NHDD
A functional Governance structure appropriately led and managed
Operationalisation, support and maintenance is critical:

Use case selection
Meaningful utilisation, monitoring, evaluation and learning

The future looks bright!

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Kenya’s Digital Health Vision

Effective expression and demonstration of Value Proposition early in the intervention is critical
Transparent, comprehensive & competent review and selection of technology solutions to power NHDD
A functional Governance structure appropriately led and managed
Operationalisation, support and maintenance is critical:

Use case selection
Meaningful utilisation, monitoring, evaluation and learning

The future looks bright!

The biggest obstacle to creating an integrated comprehensive health management information system in Kenya has been a lack of governement leadership in implementation.. Under your direction, the Ministry of Health has taken up this critical role and this is how it looks.

The implementation of this superhighway shall allow for a patient data Portability. This means that a patient can move ll the way from community to level 2, through level three and four and to even be seen at level 5 and six; All the while owning their data and controlling the permission for its access all across a secure fully automated and secure system.

Different attempts have been made at achieving this, but so long as the government does not play its central role of coordination and management to create an enabling environment, this entire system will be divided and non-communicating.

What you see at the center of this schematic is what we call a government-run shared service; it is a collection of registries and applications that will be accessed by all other systems working throughout the country to facilitate movement of the patient and their data through the system.

Other Talking points

End to End tracking of commodities.

Electronic claims management systems.

Increased patient data protection through zero trust cybersecurity implementation, physical measures and laws and policy like the digital health bill, the DPA and data healthdata governance framework.

Increased Job creation through the digital Kiosks

This is a telemedicine application that allows for health care workers to provide care from their homes and get paid for their services using novel health financing and renumeration models.

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Implementation Model for the Digital Health Vision

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Wrap Up - Where do we go from here?

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Community-driven Guidance

Concept Dictionary Reconciliation & Mapping

TS Deployment:

Local vs. Cloud

Link

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Tooling Development for Global Goods

Guided terminology management workflows

Content Publication e.g. ICD-11 & SNOMED-CT

Collaboration Workflows

Mapping Tool

From the OCL Community Roadmap:

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Community-driven Frameworks

Terminology Services Maturity Model

Link

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Community-driven Frameworks

Link

NHDD Conceptual Framework

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Join the discussion!

Terminology Service Subcommunity

First Friday of every month, 9:00-10:00 AM Eastern Time (13:00 UTC, 4pm EAT)

https://wiki.ohie.org/display/CP/Terminology+Service+Subcommunity+Call

Next two community calls:

Friday, August 4

Friday, September 1

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Discussion Questions

For the next stage of development in the NHDD framework, what are some real world use cases that could help to push this along?

How do we expect NHDDs and SDOs’ APIs and Philanthropy Standards to coexist in the future?

Has any level guidance been developed around those governance questions shared based on cross country use cases?

Me to Everyone (8:33 AM)

@Sri: The governance questions were developed with the country context in mind (rather than cross-country), but there are aspects of it that are applicable to cross-country. Specifically, the use of a common interface terminology (like CIEL) would allow for cross-country exchange in multiple formats by leveraging the mappings to reference vocabularies.

Thanks Jonathan - the question is more so has any guidance been developed that addresses the questions that countries can use

@Sri: Got it- there is only limited guidance on the governance questions so far and that’s exactly what we’d like to develop, using relevant governance models from countries that are pursuing related projects (like Kenya) and filling gaps as needed.

Since there are no fully operational NHDD programs in LMICs, this is all still developing

Andrew Kanter, MD MPH (CIEL/OCL) to Everyone (8:43 AM)

@Sri, there are examples of where this can be guided from above, such as the USCDI which provides the first step in which content is required. It doesn’t dictate the specific information model and this is where the challenge starts. In many cases, OHIE is blazing a trail by collecting evidence and developing best practice

Do you have use cases where you have supported terminology service that focuses on disease surveillance across borders especially for countries that are close to each other (COVID19 data collection as a use case)?

@Kote, there are examples of in-country and cross-country disease programs (such as COVID19) that leverage standard information models such as OMOP and standard terminologies like CIEL -> SNOMED. Check out LAISDAR in Rwanda or N3C in the US

I did not mention it, but if you can’t find the concept you need in CIEL or SNOMED/ICD, etc. then OCL allows you to create a concept and that can be evaluated for inclusion in CIEL, get submitted for international coding and therefore very few concepts in the NHDD should not be an international standard.

Isah, team lead at CDC Nigeria: Our framework is using OCL mapping that we’re rounding up. Each country has a specific minimum dataset that would map to what we have in OCL. It’s documented around standard data. This is something dynamic though - how often are updates going to OCL, and how are those updates communicated to countries? And when public health diseases like COVID, the needs arise to document this electronically. How do you receive updates from countries and the global community so that OCL can be responsive to their needs?

Andy: There’s a specific subset of covid-related terminology, which is included in CIEL, but we wanted to get those COVID codes out there in a subset.

Jon: For OCL specifically, as a digital global good, we support a community of terminology users, and it’s up to organizations to curate and handle their terminology needs. That said, we want our tools to be more supportive of best practices

From James Kariuki to Me (Direct Message) 08:55 AM

Hi Joe, would it be useful to plan a follow up session for discussion and field questions from the audience?

Me to James Kariuki (Direct Message) 08:58 AM

I think that would be great, James. I wonder if the August OHIE TS call would be the right place for that? Or should we set up another Shiriki session like this?

From James Kariuki to Me (Direct Message) 08:59 AM

We can set up another Shiriki session

From James Kariuki to Me (Direct Message) 09:00 AM

We can send the materials to the audience in advance

and share some discussion questions for them to consider