Contextualizing Syntactic Interoperability Data Standards for Health

Information Exchange in Uganda's Public Healthcare System

Bagyendera Moses

1,*

, Nabende Peter

, Godman Brian

2,3,*

and Nabukenya Josephine

Department of Information Systems, Makerere University, Kampala PO Box 7062, Uganda

Strathclyde Institute of Pharmacy and Biomedical Sciences, Strathclyde University, Glasgow G4 0RE, U.K.

School of Pharmacy, Sefako Makgatho Health Sciences University, Ga-Rankuwa, Pretoria 0208, South Africa

Keywords: Data Use, eHealth, Electronic Health Records, Syntactic Interoperability Standards, Hospitals, Uganda.

Abstract: Syntactic interoperability data standards are crucial for effective collaboration in modern health systems,

enabling seamless exchange of healthcare information. This paper aims to develop contextualized standards

to support digital healthcare in Uganda within the WHO global strategic framework 2020-2025. The standards

ensure patient data is collected, processed, shared, and stored in formats that facilitate interoperability.

Validation was done by the Health Information Innovation Research and Evaluation Technical Working

Group (HIIRETWG). A case study approach gathered primary data through questionnaires from Uganda's

healthcare experts. Derived from landscape studies, these standards underwent expert verification and testing.

Results show strong support (96%) for the developed standards, with 68% participation from digital health

experts. These standards are poised to strengthen Uganda's digital health system and inform decision-making

processes at various levels. The study underscores the importance of tailored standards to enhance healthcare

information exchange in resource-limited settings.

1 INTRODUCTION

The World Health Organization (WHO) recognizes

the crucial role of interoperability in health systems,

promoting equitable access to quality health data and

services globally (World Health Organization, 2020,

2021). This extends to various standards, including

Semantic/Terminology,Syntactic/Content, Transport,

Infrastructure, and Security/Privacy. This paper

focuses on Syntactic interoperability data standards,

emphasizing their significance in ensuring consistent

data structure and formatting for seamless

information exchange within healthcare systems.

Globally, three commonly used syntactic

interoperability data standards are Health Level

Seven (HL7), Fast Healthcare Interoperability

Resources (FHIR), and Digital Imaging and

Communications in Medicine (DICOM). These

standards provide a common language for healthcare

data exchange, facilitating electronic sharing to

enhance future patient care (Lin et al., 2010;

Umberfield et al., 2023).

Authors of correspondence

In Sub-Saharan Africa, limited interoperability

within health systems impedes effective data

collection and use (Verbeke et al., 2015). While some

countries like Rwanda, South Africa, and Kenya have

implemented standards to support seamless

integration and patient information flow, there's a

dearth of appropriate syntactic interoperability

standards continent-wide. This challenge is not

unique to Africa, as even European healthcare

systems face difficulties in capturing uniform patient

data (Pisana et al., 2022).

The barriers to interoperability and data utilization

in public healthcare systems include limited

knowledge of data analysis, poor attitudes toward

data reporting, and cultural challenges (Jawhari et al.,

2016; Kiberu et al., 2017; Kiwanuka & Nabukenya,

2023; Matovu & Ngo’ng’ Ocholla, 2009; Okungu et

al., 2019).

In Uganda, the Ministry of Health (MoH) has yet

to officially adopt inteoperability datae standards for

electronic data sharing, despite some health facilities

implementing these standards independently

(Kiwanuka et al., 2021; Wamema et al., 2023). The

Moses, B., Peter, N., Brian, G. and Josephine, N.

Contextualizing Syntactic Interoperability Data Standards for Health Information Exchange in Uganda’s Public Healthcare System.

DOI: 10.5220/0012711100003699

Paper published under CC license (CC BY-NC-ND 4.0)

In Proceedings of the 10th International Conference on Information and Communication Technologies for Ageing Well and e-Health (ICT4AWE 2024), pages 267-275

ISBN: 978-989-758-700-9; ISSN: 2184-4984

267

lack of comprehensive guidelines for sharing

electronic patient data is a major barrier, hampering

the realization of the WHO global strategic

framework (Adeleke & Lawal, 2015; Ishijima et al.,

2015; Kiberu et al., 2017; Kiwanuka et al., 2021). The

existing Health Management Information System

(HMIS) in Uganda, initiated in 1985 and evolved into

DHIS 2 in 2012, aims to collect and manage

epidemiological and administrative information at the

district level.

Unfortunately, these systems lack customized

syntactic interoperability standards, hindering

reliable, timely, and integrated electronic health data

sharing.

The study seeks to validate requirements and

syntactic interoperability data standards for Uganda's

healthcare system, aligning with the WHO Global

Framework, 2020-2025, to provide guidance for

future healthcare improvements (World Health

Organization, 2021). As a result, provide guidance to

all key stakeholders in Uganda to help improve the

healthcare of its citizens in the future.

2 METHODOLOGY

2.1 Study Design

The study was conducted in three phases. First, a

requirements analysis was undertaken, which is a

descriptive cross-sectional survey to identify the

requirements of interoperability data standards for

HIE in Uganda (Peddireddy & Nidamanuri, 2021;

Shah et al., 2014) . The requirement analysis is seen

as an important and key stage in Design Science

Research (DSR) and artifact (Baskerville et al., 2018;

Peffers et al., 2007). This analysis is typically

performed using brainstorming, a systems review,

and a literature review (Achampong & Dzidonu,

2017). This approach identifies the requirements of

the various actors and users of a system yet to be built.

The outcome measures of the requirement analysis

process are the purpose, scope, and objectives of any

proposed solution.

In the second phase, the Syntactic Interoperability

data standards were generated based on the

ascertained requirements from the first phase.

Syntactic interoperability Data standards encompass

regulations for exchanging and sharing data within a

standardized framework. A number of standards

should be applied to ensure that the patient (health)

data collected as well as the information processed,

shared, and stored, are in formats that support

syntactic interoperability. These include; Patient

Identification, Health Information Exchange

Registries, Compliance, Management and

Communication of Medical Imaging Data, Health

Information Systems, Digitization of Health

Information, Security and Privacy for Data and

Training and capacity building Standards.

In the final phase, the standards were face-

validated through technical expert opinion selected

by ministry of health digital health technical working

group. Candidate standards were passed through the

process which helped to filter suitable standards for

possible adaption or contextualization for the

Ugandan health system. The process helped to

eliminate candidate standards that were not relevant

to the needs of the environment. Only standards that

survived this elimination stage were subsequently

considered for adaption/contextualization.

2.2 Study Population and Sample

Expert opinion was obtained from the 17 respondents.

The selection criteria for inclusion of the respondents

required that they had been actively involved in the

digital health sphere of Uganda for at least 5 years

and/or had participated in the stakeholder validation

workshop to understand the challenges of digital

health in Uganda. The stakeholder validation meeting

enabled respondents to have a background of the

derived requirements and validate them from an

informed perspective, with the respondents chosen to

represent the full spectrum of digital health

stakeholders in Uganda to increase the heterogeneity

of the study findings.

2.3 Data Collection

Data for both phases were collected using an

interviewer-administered questionnaire that was

subsequently adapted to requirement validation

techniques (Peddireddy & Nidamanuri, 2021). The

questionnaire included standards contextualization

development syntactic interoperability data standards

criteria. These were the syntactic interoperability data

standards development process, standards

implementation, M&E, and the interoperability data

standard determination process.

Respondents used a 5-point Likert scale of either

Yes (agreed) or No (disagreed) regarding the

suitability of the Syntactic Interoperability data

standards validated based on five evaluation metrics,

i.e., completeness, clarity, applicability, usefulness,

and efficacy. The rating statements used a scale of 1

to 5, where 1 = strongly agree, 2 = agree, 3 = neutral,

4 = disagree and 5 = strongly disagree (Altillo et al.,

ICT4AWE 2024 - 10th International Conference on Information and Communication Technologies for Ageing Well and e-Health

268

2021; Dackus et al., 2012; Gupta et al., 2019;

Mbonane et al., 2023).

Regarding the requirements for syntactic

interoperability data standards development,

respondents selected either Yes, No, or Not

applicable to the proposed contextualized standards

well-specified.

2.4 Data Management and Analysis

The collected quantitative data was analyzed using

MS Excel. This included data on current challenges

in light of the various challenges to the

standardization of digital health in Uganda’s health

system (Alunyu et al., 2021; Kiwanuka et al., 2021).

We subsequently derived and validated

requirements to guide the development of the

syntactic interoperability data standards for Uganda.

These requirements were also informed by the

literature and success stories in other countries

(Ameller et al., 2012; Tun & Madanian, 2023) .

The interoperability data and the standards were

adapted and subsequently presented to Digital Health

stakeholders in Uganda for their consultation and

validation. The Ministry of Health Information ,

Innovation and Research Technical Working Group

(HIIRETWG) developed a validation tool/set of

criteria for validating the standards. Standards

validation and testing focused on completeness,

usability, applicability, and perceived usefulness.

This led to consensus building that resulted in the

approval of documented standards.

2.5 Ethics

The ethical clearance to conduct this research was

approved by both the Makerere University School of

Public Health Research ethics committee (REC) and

the Ministry of Health.

3 RESULTS

3.1 Characteristics of Respondents

A total of 17 respondents were recruited giving a

response rate of 68% (n=17/25). Respondents

included, Digital Health professionals, ICT officers,

Systems Developers, Biostatisticians, Monitoring and

Evaluation specialists, and epidemiologists (Figure 1).

Figure 1: Distribution of respondents by category.

3.2 Challenges Facing Standardization

of Interoperability of Health Data

and Requirements for

Interoperability Data

Standardization

Table 1 contains details of the challenges facing the

standardization of Health Information Exchange in

Uganda based on Phase 1 of the research project.

Table 2 contains the derived and validated

requirements to guide the development of the

syntactic interoperability data standards for

Uganda

based on the identified challenges facing the

standardization of Health Information Exchange in

Uganda (Table 1).

3.3 Syntactic Interoperability Data

Standards

Table 3 contains details of the Syntactic

Interoperability data standards generated from the

designated requirements. These include data

exchange and sharing standards. The contextualized

syntactic interoperability data standards should be

applied to ensure that the patient (health) data

collected, information processed, shared, and stored

are in formats that support syntactic interoperability.

Contextualizing Syntactic Interoperability Data Standards for Health Information Exchange in Uganda’s Public Healthcare System

269

Table 1: Challenges facing standardization of Health Information Exchange.

Theme Sub-themes Challenge

Limited

guidelines for

standardization

Policy

development

Limited guidelines for collecting, storing, sharing, and exchanging electronic

patient data to inform decision-making and efficient service delivery.

Policy adoption Despite some health facilities implementing or having adopted electronic sharing

and exchange of patient data guidelines, the Ministry of Health is yet to officially

adopt them.

Inadequate

capacity

Monitor

compliance

There is an inadequate capacity to monitor compliance with Interoperability Data

Standards and or guidelines for data use and management across the Health sector

Interoperate

ima

Lack of reliable mechanism for managing health images information/data

collection, stora

e, and sharin

amon

health

roviders

Coordination Uncoordinated process guidelines for capturing paper-based patient records into

digital formats suitable for Electronic Medical Records (EMR), Electronic Health

ecords (EHR), and Personal health records (PHR).

Training Healthcare workers have inadequate training, and experience in data management

skills including; data collection, analysis, reporting, and use to inform the decision-

making process at different levels of the continuum of care.

Data safety Data privac

Data Security and Privacy Standards have not been officially adopted.

Security Health facilities do implement and/or use insufficient security and privacy

measures for electronic health data; which may compromise/put at risk the privacy

and con

identialit

atients’ data.

Table 2: Requirements for interoperability data standardization.

Theme Sub-theme Challen

e addresse

Interoperation

data

framework

Procedure Develop data interoperability standards/ SOPs/Guidelines for collecting, storing,

harin

, and exchan

electronic

atient data.

International

benchmarks

These should be based on the international standards for Health Information

Exchange (syntactic) - HL7, FHIR, DICOM, and the Uganda Data Protection and

Privacy Act, 2019.

An adoption mechanism should be put in place for data interoperability standards

or the electronic sharin

and exchan

e o

atient data across the health secto

Security The MoH should develop guidelines to support the core data security elements of

confidentiality, integrity, and availability across the health sector to roll out data

Interoperability Data Security Standards/guidelines for health information

mana

ement.

Images and media Develop Data Standards for Images, Multimedia, Waveform, and documents for

exchanging images across the continuum of patient care based on the international

standards for Health Image Information Exchange (DICOM), and the Uganda Data

Protection and Privacy

ct, 2019).

Migration of paper

data to electronic

forms

Formulate a strategy to migrate paper-based health records into electronic formats

to enhance data sharing and use.

Compliance

mechanism

Enforcement The MoH should enhance the compliance mechanism of all users to adhere to

Interoperability Data standards.

Privacy and

securit

Deploy security and privacy measures that protect the privacy and confidentiality

electronic

atient data at all levels.

Capacity

building

Monitor process MoH should build the capacity of data custodians and owners to monitor the

implementation and compliance of data management including data cleaning and

adherence to standards at all levels of the continuum of care.

Awareness /

Advocacy

The MoH should create data use and utilization awareness campaigns to monitor

compliance requirements and structures for health Information/data management.

The MoH should advocate for digital health courses including data analysis,

monitoring, and evaluation to be incorporated into health workers' training

curricula.

Access Data securit

uidelines should be well disseminated to all relevant stakeholders.

Capability The MoH should develop training guidelines for health workers on basic ICT Skills,

analysis, and data management

ICT4AWE 2024 - 10th International Conference on Information and Communication Technologies for Ageing Well and e-Health

270

Table 3: Contextualized Syntactic Interoperability Data Standards.

ntactic Intero

erabilit

Data Standards

Standar

Statement

UG_DHS_DS01_P1: Patient

Identification

Establish a unique, standardized, comprehensive, and comprehensible

Electronic Medical Record (EMR), Electronic Health Records (EHR), and

Personal Health Record

(

PHR

)

UG_DHS_DS02. _ NHIE: Health

Information Exchange Registries Standard

Developing and maintaining comprehensive interoperable master lists of

health facilities, providers, and patients/clients is a necessary step toward

monitoring health infrastructure and services that form a core component

the National Health Mana

ement In

ormation S

stem

(

HMIS

)

UG_DHS_DS03. _CP: Compliance Establish an Intelligent and Integrated monitoring mechanism to ensure

compliance across the health sector. Generate data for observation and

clinically relevant events and encounters. This requires having a common

semantic and syntactic logical information model and structural

com

osition.

UG_DHS_DS4. -_MI: Management and

Communication of Medical Imaging Data

All health record management complies with the DCOM/ PACS Standards

in terms of imaging modalities including radiography, magnetic resonance

imaging (MRI), nuclear medicine, ultrasound, tomography,

echocardiography, X-ray, CT, and other modalities used in radiology,

cardiology, radiotherapy, ophthalmology, and dentistry.

UG_DHS_DS5_HIS: Health Information

stems Standard

Establish mechanisms for implementing and adhering to set guidelines for

all HIS solutions in the health secto

UG_DHS_DS6_DHI: Digitization of

Health Information Standard

Establish an ICT infrastructure that forms the foundations for electronic

communication and information/data sharing across geographical and

health-sector boundaries. This includes the computing infrastructure,

databases, directory services, network connectivity, and storage that

underpin a national eHealth environment.

UG_DHS_DS7_SP: Security and Privacy

for Data Standards

The Ministry of Health shall ensure adherence to the National Information

Security Policy and Strategy, the Uganda e-Government interoperability

ramework, and other relevant global standards.

UG_DHS_DS8_TCB: Training and

acit

buildin

Standar

Build health workforce skills in data management and use through training,

mentorshi

, and coachin

3.4 Validation of Syntactic

Interoperability Data Standards

Figure 2 depicts respondents' views regarding the

standards contextualization development of Syntactic

Interoperability Data Standards. 94% of participants

agreed that the framework supports interoperability

data standards suitable to support HIE, 68% agreed

that the framework encompasses all stakeholders

involved in the syntactic interoperability data

standards development, and 88% agreed that the

framework facilitates members to set standards that

satisfy the principles of clarity, well-defined and

precise, that is required for standards. In addition, 88

% of the respondents agreed that development

process was systematic enough to guide the

interoperability data standards development for the

MoH. However, 31% of respondents were neutral on

whether the framework encompasses all stakeholders

involved in the Syntactic Interoperability data

standards development.

Figure 2: Validation of Syntactic Interoperability Data

Standards.

4 DISCUSSION

We believe this is the first study in Uganda to assess

the requirements and validate the syntactic

interoperability data standards for Uganda following

initial activities. Our study found that the main

Contextualizing Syntactic Interoperability Data Standards for Health Information Exchange in Uganda’s Public Healthcare System

271

requirements for standardization should be explicit

about data sharing and exchange across the four

domains, i.e., business, data, applications, security,

and technology, and users should extract, analyze,

and use them. The main challenges were limited

guidelines for the standardization process, inadequate

capacity, and data safety. Encouragingly, the level of

validation by expert opinion was high regarding the

proposed framework.

As far as we know, we believe this is also the first

study in a resource-limited country to validate the

interoperability data standard for healthy ecosystems.

The study identified that the key challenges to the

implementation of interoperability standards for

health in Uganda is the current heterogeneity of

health information systems, with the heterogeneity of

health information systems posing a significant

challenge to the implementation of interoperability

standards for health in the country. Current health

information systems in Uganda differ in terms of their

data structure, data format, data definitions, and data

exchange protocols. This heterogeneity makes it

difficult to establish a common language for sharing

and exchanging health information.

Over the years, Uganda similar to other LMICs

has seen a general transformation of the Health

Information System and specifically, a rapid growth

in eHealth solutions (Ndabarora & Chipps, 2014).

The recognition of ICT as having great potential to

improve the delivery of healthcare services, and

therefore an aid to the delivery of public health

services to Ugandans, has resulted in the development

and execution of many eHealth interventions that

have mainly stayed at the pilot stage commonly

known as the “Uganda eHealth Pilotitis Disease”. In

other words, these initiatives have not been successful

in further scaling and implementation across the

entire country due to several impediments in four key

categories: governance, financial and human

resources, standards, and infrastructure

availability(Huang et al., 2017). Worse still, these

interventions address individual health programs and

are largely parallel and/or uncoordinated centrally by

the Ministry of Health. This has hindered seamless

health data flow across both the public and private

sectors in Uganda coupled with stretched human

resource to support data collection, transformation,

presentation, and archiving, among others

(Ndabarora & Chipps, 2014).

To address this challenge, Uganda needs to invest

in standardizing its health information systems. This

will involve developing a common data model for

health information, adopting common data standards,

and implementing interoperability standards

including FHIR (Fast Healthcare Interoperability

Resources), HL7 (Health Level Seven International),

and DICOM (Digital Imaging and Communications

in Medicine). In this regard, investment is required in

terms of standards-compliant systems development

and implementation. Alongside this, considerable

effort is required in terms of change management to

achieve interoperability. The investment required by

early standards adopters at the leading edge of new

initiatives is typically significantly higher and the

benefits are slower to accrue than that required by

implementing standards-based systems that are

already widely in use. The late adopter benefits from

the investment and efforts of early adopters in terms

of time and money needed to ensure any failures and

barriers to success are dealt with. This means that

vendors and providers in particular may be hesitant to

bear the cost of progressing with the implementation

of interoperability standards until Government takes

the lead in advocating and implementing

interoperability data standards (Brailer &

Blumenthal, 2010a).

As mentioned, one of the key challenges to the

implementation of interoperability

standards for

health in Uganda is the current heterogeneity

health information systems, similar to other countries

(Katehakis & A Kouroubali, 2019). Most large

hospitals will use many different ICT systems from

different suppliers, each supporting different

functions. There is no single health information

system that could facilitate all administrative,

clinical, technical, and, laboratory ICT requirements

of a large healthcare organization. In such a

fragmented environment, the requirement to achieve

interoperability is critical and the need for

interoperability standards becomes evident (Brailer &

Blumenthal, 2010a; Jama, 2016; Perlin et al., 2016).

This needs to be borne in mind by all key stakeholders

in Uganda going forward.

Another approach to overcoming this challenge is

to use data integration platforms that can harmonize

data from different systems, and convert them into a

common format. These platforms can help facilitate

the exchange of health information between different

health information systems.

In addition, capacity building and training

programs can be implemented to improve the skills

and knowledge of health practitioners on health

information systems and interoperability standards.

This can help ensure that the health workforce in

Uganda is equipped with the necessary skills to

effectively use and exchange health information

across different systems as they seek to improve the

care of patients including access to and the use of

ICT4AWE 2024 - 10th International Conference on Information and Communication Technologies for Ageing Well and e-Health

272

medicines (Kiggundu et al., 2022). Based on our

findings in the study, implementation initiatives were

generated to solve the problems of fragmented

implementations of eHealth systems, a lack of

integrated data sharing, and a lack of reliable, timely,

and lack of integrated access to patient data

(GÅRDSTEDT et al., 2013; Huang et al., 2017).

Similar to other LMICs, Uganda needs to adopt,

contextualize interoperability data standards to

facilitate health Information Exchange in the Uganda

health system.

The validated requirements should lead to the

development or contextualization of syntactic

interoperability data standards for data use and aid the

decision-making processes, and offer an efficient

continuum of care, as stipulated by the WHO (World

Health Organisation, 2012). In addition, most

respondents agreed on all the requirements indicating

the need to fast-track standardization activity in

Uganda's healthcare system as previously suggested

by Alunyu et al. (2021)(Alunyu et al., 2021). Whereas

a few respondents had concerns that some of the

requirements are over-ambitious, others pointed out

that some of the standards were too prescriptive.

These few concerns could be solved by producing

detailed guidelines on the implementation of the

standards. The Ministry of Health and its partners

should also take advantage of these initiatives that

have not been successful in other countries when

developing and integrating syntactic interoperability

data standards. These include addressing four key

areas namely: governance, financial and human

resources, standards, and infrastructure availability.

These interventions should holistically address all

health programs coordinated centrally by the Ministry

of Health. This will enable seamless health data to

flow in the future across both the public and private

sectors in Uganda along with the necessary human

resource to support data collection, transformation

and reporting.

Cultural changes within the health sector are also

required to ensure independent healthcare

organizations are willing to share health information

beyond the confines of

their systems. Standardization

removes an element of local autonomy for providers

and the perception may exist that independent control

of health information systems by providers is

compromised (Kim, 2005; World Health

Organization, 2013). The changes required in

processes and operations at the local level also act as

a barrier to implementation as providers and local

ICT professionals must be educated about new

processes and methods of recording health

information with the introduction of standardized

terminologies (Umberfield et al., 2023). This will

change with developments in health data flow in

Uganda in the future.

Overall, whilst the benefits of interoperability in

healthcare are considerable, they may be difficult to

realize as the benefits are dispersed across many

stakeholders including vendors, providers,

policymakers, and the individual. Some vendors use

a lack of interoperability to their advantage as a

customer retention strategy by building systems that

can only interoperate with their own products (Brailer

& Blumenthal, 2010a). This also needs to be

addressed.

5 CONCLUSION

In conclusion, while the majority of respondents have

endorsed the derived interoperability data standards

artifact, it's important to recognize that selection

criteria may evolve over time to accommodate

changing needs. The successful implementation of

the validated syntactic interoperability data standards

promises to enhance service delivery, improve patient

outcomes, and ensure equity and safety in healthcare.

However, numerous barriers and challenges must be

addressed, including the availability of skilled

personnel, motivation, and adequate resources.

Continuous monitoring of the situation is imperative.

Therefore, significant investment is warranted in

the development and implementation of standards-

compliant systems. Additionally, substantial effort is

needed in terms of change management to achieve

seamless interoperability. Early adopters of

standards-based systems typically incur higher

investment costs and experience slower benefits

compared to those implementing established

standards. Late adopters benefit from the groundwork

laid by early adopters, saving time and resources

required to overcome obstacles and failures.

Consequently, vendors and providers may hesitate to

invest in interoperability standards until government-

led advocacy and implementation efforts gain

momentum (Brailer & Blumenthal, 2010b).

Funding: There was no funding for this paper.

Conflicts of Interest: The authors declare there are no

conflicts of interest.

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273

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