2 of 14

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.

3 of 14

Background of the Kenya Terminology Service

Kenya Master Facility List

Facility-based Health Information Systems e.g. Funsoft

Donor-driven disease specific Systems e.g. HIV

Kenya DHIS2

Disease surveillance systems

National Registries e.g. HCW registry, NHIF, IPRS

Research

Paper-based records

4 of 14

Envisioning a government-endorsed National Health Terminology Service program consisting 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 provide standards-based terminology transactions to a health data exchange and tools to help author and maintain terminology.

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 customized for use in the country’s health system (e.g. concept dictionary).

HEALTH INFORMATION INTERCHANGE (HIE)

May include terminologies, ontologies, dictionaries, code systems, value sets, mappings, data elements and measures

Need a leader and a driver for the activity - it can't just be a group of decision-makers in meetings

Considering introducing a 4th pillar: Community - includes in-country stakeholders and global stakeholders

Application creators & implementers – Companies that are building out the components of the ecosystem (e.g. point of service applications or architectural components), which may leverage Global Goods
Global Good providers – foundational, broadly shared applications
Data standards publishers - standards developers e.g. CIEL or HL7
Users of the above systems
Global community i.e. Application creators, users, and implementers from outside of your context/jurisdiction but have similar use cases (although may have different tools or sets of content)
NHDD Administrators/owners - react to on-the-ground needs and provide guidance on how to consistently model that with respect to other users and use cases

Governance implies decision-making, not the community/participants/users

Who are the people that need to be sharing, reviewing, collaborating?

5 of 14

Current Ke-NHDD Conceptual Framework

KenyaEMR

National Data Repository

Kenya HIE

(Uses NHDD to normalize reported data)

AfyaKE, Tiberbu

KenyaEMR OpenMRS-compatible Concept Dictionary

SNOMED

ICD

LOINC

etc

subscribes to

Kenya subsets of curated concepts & customizations

Plus a small set of required local concepts

Local dictionaries

How normalized data & data model are coming out of reporting systems determines how much normalization needs to happen in the HIE

aligns with

Organization-Level Dictionaries & Customizations

Orgs must align with Kenya standardized concepts for any data that is reported to the HIE, but may still have their own custom concepts

Country-Level Subsets & Customizations

Kenya’s selection of data representations that are valid in the HIE

CIEL Interface Terminology

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

Reference / Administrative Code Sets

maps to

maps & aligns to

tbd

subsets

reports data to

Point of Service (POS) Applications

6 of 14

Current Status of the Ke-NHDD

Software

Kenya assessed available software solutions and selected Open Concept Lab (OCL) open-source terminology service
OCL deployed as KeNHDD on Kenya MOH servers

Content

Reference: ICD-10, ICD-11
Custom:

KenyaEMR/AfyaKE concept dictionary
Facility list, medicines, lab supplies

Governance

Governance framework under development

Capacity Building

Working with University of Nairobi and Regenstrief/OHIE
Bringing in terminologists for the upcoming digital health agency

KeNHDD screenshot: https://nhdd.health.go.ke/

7 of 14

Work in Progress:

National Health Data Dictionary Framework

Developed in the OpenHIE Terminology Services Subcommunity

8 of 14

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.

9 of 14

An NHDD is a government-endorsed program consisting 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 to provide standards-based terminology transactions to a health data exchange and tools to help author and maintain terminology.

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 customized for use in the country’s health system (e.g. concept dictionary).

May include terminologies, ontologies, dictionaries, code systems, value sets, mappings, data elements and measures

Need a leader and a driver for the activity - it can't just be a group of decision-makers in meetings

Considering introducing a 4th pillar: Community - includes in-country stakeholders and global stakeholders

Application creators & implementers – Companies that are building out the components of the ecosystem (e.g. point of service applications or architectural components), which may leverage Global Goods
Global Good providers – foundational, broadly shared applications
Data standards publishers - standards developers e.g. CIEL or HL7
Users of the above systems
Global community i.e. Application creators, users, and implementers from outside of your context/jurisdiction but have similar use cases (although may have different tools or sets of content)
NHDD Administrators/owners - react to on-the-ground needs and provide guidance on how to consistently model that with respect to other users and use cases

Governance implies decision-making, not the community/participants/users

Who are the people that need to be sharing, reviewing, collaborating?

10 of 14

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

11 of 14

NHDD Framework: Content

Hierarchical terminology implementation uses international standards customized appropriately for country and local implementation

Facility-level Dictionaries (e.g. formularies)

Organization-level Dictionaries / Customizations

Country-level Subsets / Customizations

Curated Concept Sources / Interface Terminologies (e.g. CIEL, IMO)

Reference / Administrative Code Sets (e.g. SNOMED, ICD, HL7)

Responsive Local & National Governance

Submissions /�Feedback to Standards

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

12 of 14

A periodic data standards assessment sets a baseline and tracks the maturity of endorsed standards in the health system

Example Country Health Data Standards Assessment

Note: A more comprehensive list of health data standards and domains is available in the OpenHIE Terminology Services Planning and Implementation Guide (2016): Appendix A: Annotated Reference Terminologies

Data Standards Domain	Selected Data Standard(s)	Governing Entity	Current Maturity Level of Use in Country	Target Maturity Level (e.g. 2025)	Gaps / Next Steps
Diagnosis and Purpose of Visit	e.g. Local subset of ICD-10, using CIEL concepts at the point of service	Department of Public Health	3 - Shared Electronic Reference	4 - Digital Subscription	Selected applications routinely incorporate updates
Medications	e.g. National essential medicines and supplies list	Drug Regulatory Agency	2 - Emerging	3 - Shared Electronic Reference	Publish releases in NHDD; Map to reference terminology, where possible; Formalize governance
Immunizations	n/a	tbd	2 - Emerging
Allergies	n/a	tbd	2 - Emerging
Laboratory Tests and Results	n/a	tbd	2 - Emerging
Procedures/ Services	n/a	tbd	1 - Nascent	2 - Emerging	Endorse reference terminology
Billing Codes	n/a	tbd	1 - Nascent	2 - Emerging	Endorse reference terminology

13 of 14

NHDD Framework: Governance

Terminology Management Capability Assessment (WORK IN PROGRESS)

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?

14 of 14

Join the discussion!

Terminology Service Subcommunity

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

Community page: https://bit.ly/ohie-ts

NHDD Framework: https://bit.ly/nhdd-framework

Next community call:

Friday, December 1

Thank you!

Francis Njiri: fnjiri@gmail.com

Steven Wanyee: swanyee@intellisoftkenya.com

Joe Amlung: jamlung@regenstrief.org

Jonathan Payne: paynejd@gmail.com