Establishing the State of Practice about Data Standards in

Monitoring Healthcare Interventions for HIV in Uganda’s

EMR-based Health Information Systems

Achilles Kiwanuka

, Moses Bagyendera

, Joseph Wamema

, Andrew Alunyu

Mercy Amiyo

, Andrew Kambugu

and Josephine Nabukenya

Department of Information Systems, Makerere University, Kampala, Uganda

Infectious Diseases Institute, Makerere University Kampala, Kampala, Uganda

{mamiyo, josephine}@cit.ac.ug, akambugu@idi.ac.ug

Keywords: eHealth, Data and Interoperability Standards, Electronic Medical Records, Health Information Systems.

Abstract: Electronic Health Information Systems (EHIS) in Uganda are characterised by inaccessibility to reliable,

timely and integrated data for effectively monitoring and tracking continuity of care for people living with

HIV, exacerbated by disparate, fragmented EHIS in varying health system levels that are not interoperable

and lack common data standards. In order for data to be comparable, there has to be uniformity in terms of

standards that are employed in a uniform manner in all data management processes. In this study, we

established the state of current practice regarding data and interoperability standards in monitoring and

evaluating healthcare interventions for HIV in Uganda’s EMR-based health information systems. The study

findings indicate that there are scanty practices and/or implementation of the eHealth standards (data and

interoperability), and limited to noncompliance of monitoring these standards in the implementation of the

HIV healthcare interventions. Accordingly, our study recommendations point to the need of designing data

and interoperability frameworks to provide for the specific set of standards, protocols, procedures, best

practices and policies for eHealth standardisation in Uganda’s health system.

1 INTRODUCTION

An estimate of 6.7% of Ugandan adult population

have been diagnosed and are currently living with

HIV (Ministry of Health, 2017). Given the magnitude

of the disease, there is a need to use data-driven

approaches to facilitate decision-making ensuring

appropriate interventions are implemented in relevant

populations in the right way (PEPFAR, 2011). In

order for data to be comparable, there has to be

uniformity in terms of standards that are employed in

a uniform manner in all data management processes.

According to the Institute of Electrical and

Electronics Engineers (IEEE), a standard is a

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https://orcid.org/0000-0002-4731-2496

“document that defines the characteristics of a

product, process or service, such as dimensions,

safety aspects, and performance requirements”

(IEEE, 2010). Standards facilitate the consistent and

precise collection and exchange of information across

different services of the health system (World Health

Organization & International Telecommunication

Union, 2012) and are a prerequisite for the smart

healthcare (Chang et al., 2019) .

Uganda’s Ministry of Health has implemented

numerous electronic-based Health Information

Systems (EHIS) including OpenMRS/UgandaEMR,

Integrated Clinic Enterprise (ICEA), and District

Health Information Software 2 (DHIS2) that are used

for reporting, documenting and managing HIV and

200

Kiwanuka, A., Bagyendera, M., Wamema, J., Alunyu, A., Amiyo, M., Kambugu, A. and Nabukenya, J.

Establishing the State of Practice about Data Standards in Monitoring Healthcare Interventions for HIV in Uganda’s EMR-based Health Information Systems.

DOI: 10.5220/0010264302000211

In Proceedings of the 14th International Joint Conference on Biomedical Engineering Systems and Technologies (BIOSTEC 2021) - Volume 5: HEALTHINF, pages 200-211

ISBN: 978-989-758-490-9

TB patients (Ministry of Health, 2017). Yet the

country’s health system is still challenged with

translation of data into effective use for decision

making and policy development (Henriksson et al.,

2019). This situation is exacerbated by disparate, un-

interoperable fragmented EHIS in varying health

system levels and lack of common data standards to

facilitate sharing data consistently across the health

system (Ministry of Health, 2017; Alunyu and

Nabukenya, 2018; Egwar et al., 2020).

To this end, this study aimed at investigating the

current state of practice regarding data standards for

monitoring healthcare interventions of HIV and TB in

Uganda’s EMR-based health information systems

(EHIS). The choice of these diseases was remitted on

the fact that several global and local efforts, that is,

Uganda government and Health Development

Partners (HDPs) implemented enormous EHIS

investments to accelerate the achievement of the

epidemics control of HIV and TB (Ministry of Health,

2010). Particularly, various duplicated and

disintegrated EHIS have been developed to manage

the HIV and TB epidemic; as such these require

standardising in order to facilitate proper health

information exchange across Uganda’s health system.

2 METHODOLOGY

Study Design: We used the cross-sectional design

since it provides a snapshot of the prevalence of the

study subjects in a single time point (Awaisu & Banan

Mukhalalati, 2019).

Study Area: The study covered four key regions

in Uganda (Kampala, Wakiso, West Nile and Mid-

Western) representing the full spectrum of HIV and

TB prevalence (Ministry of Health, 2017). Kampala

and Wakiso are mainly urban high-HIV prevalence

regions, characterised by high mobility, slum-

dwelling, and limited social support. Mid-Western

comprises some urban/rural populations undergoing

significant socio-economic transformation with an

influx of high-risk groups for HIV transmission like

sex workers). West Nile region is a low-prevalence,

sparsely populated area but prone to the influx of

refugees (currently standing at 1.4 million).

The structure of the health system in Uganda is

decentralised in to six levels, which include: village

health teams, health centre II, health centre III, health

centre IV (district hospital), regional referral hospital,

and national referral hospital. The health facilities

that serve the various levels are referred to as health

centres II, III, IV, and hospitals (district and regional)

(Ministry of Health, Health Systems 20/20 &

Makerere University School of Public Health, 2012).

Data Collection Sites: A stakeholder analysis

was done for all institutions affected by eHealth data

and interoperability standards. The study engaged

stakeholder groups at 4 different health system levels:

national-referral, regional-referral, district hospitals

and HCIVs. The focus on the top 4 levels was due to

the existence of fairly mature but suboptimal EHIS

for data collection and the clear links between those

levels and data use for decision making processes.

Inclusion Criteria: The health facilities that were

included in this study were selected based on the

similarities of the healthcare system in the different

regions in the country, coupled with analogous health

services in health facilities in Uganda. The selected

facilities were health centre IVs in the four key

regions: Central (Kasangati, Namayumba, Ndejje,

Wagagai, Wakiso, Kitebi), Western (Kigorobya,

Emesco, Kibaale, Kakindo, Kakumiro, Kikuube),

Northern (Atiak, Aboke, Amach, Awach) and West

Nile (Adumi, Kuluva, Omugo, River Oli, Pakwach,

Warr). Additionally, data as collected from hospitals

(Kuluva, St Mary’s Lacor, Nebbi and Mulago) and

regional referral hospitals (Entebbe, Hoima, Lira,

Gulu). The combination of health facilities increased

heterogeneity, internal validity and thus

generalizability of the study findings.

Sampling Method and Size: Purposive strategies

guided the sampling process by using individual

judgement to select cases that answer the research

questions (Saunders et al., 2012). The study

population included respondents at health facilities

and national level. The study respondents at health

facilities included: clinicians (medical/clinical

officers) – 32, pharmacists or their assistants – 20,

laboratory technologists or their assistants – 28 and

nurses or their assistants – 51. At the national level,

respondents were from Uganda National Bureau of

Standards (1), Ministry of ICT and National

Guidance (1), National Information Technology

Authority – Uganda (1), Ministry of Health (3),

Central Public Health Laboratory (1), information

system developers (2), research institution (1),

telecommunications company (1) and HDPs (4).

Data Collection and Analysis: Primary data

were collected using semi-structured interviews pre-

programmed on a tablet using Open Data Kit (ODK)

software. Secondary data were collected through

document analysis of the existing data. Data were

collected by 16 research assistants who were trained

and piloted with the data collection tools before the

actual data collection. The interviews were audio

recorded in English, transcribed and then loaded into

Establishing the State of Practice about Data Standards in Monitoring Healthcare Interventions for HIV in Uganda’s EMR-based Health

Information Systems

201

NVIVO software version 12 for analysis.

Quantitative data were analysed using descriptive

statistics and presented using tables and figures.

Qualitative data were analysed using thematic

analysis methods (Maguire & Delahunt, 2017).

Ethical Clearance: Ethical clearance to conduct

the study was obtained from the Makerere University

School of Public Health Research Ethics Committee

(REC) and/or Institutional Review Board (IRB); and

the permission to conduct the research in the

healthcare sites was sought from the Ministry of

Health. Written informed consent was also obtained

from study participants prior to being interviewed.

3 RESULTS

The results are presented in three subsections:

existence and practice of eHealth standards,

standardisation support provided to the Ministry of

Health, and monitoring implementation of eHealth

data and interoperability standards.

3.1 Existence and Current Practice of

eHealth Standards

In this section, we report on the eHealth standards

categorised as medical coding, data exchange and

sharing, communication infrastructure and data

security and privacy standards.

3.1.1 Medical Coding Standards

Medical classifications transform diagnoses or

procedures into standardized codes. Regards

classification of diseases, 81% of the respondents

mentioned that they classify data while providing

services to clients as shown in figure 1. When

providing HIV services, the data is coded using the

Differentiated Service Delivery Models (DSDM) of

HIV Services in Uganda as reported by respondent

HSL2-06: “we do a lot of medical coding and we

always have somewhere where the codes are

explained, for example under DSDM” – HSL2-06.

The International Classification of Diseases (ICD)

standard has been adopted and integrated in the

UgandaEMR, a system that is implemented in many

Uganda health facilities, as mentioned by IP10.

Respondent M01 also noted that the Ministry of

Health had adopted the ICD11 standard for disease

coding and the standard had been integrated in some

of the systems that are used at the Ministry. The

ICD10 standard was also found to be implemented in

Mulago and St Mary’s Lacor hospitals.

In research institutions, it was found that the

Medical Dictionary for Regulatory Activities

(MedDRA) is one of the medical coding standard that

was used in medical research databases.

Management is instrumental in the use of such

standards in the health facilities as 70% of the

respondents mentioned that management supports

them to use classification of diseases and procedures

while performing their duties. Insurance companies

also did require health facilities to report medical

diagnoses using the ICD standard.

3.1.2 Data Exchange and Sharing Standards

Majority (64%) of the respondents were aware of the

presence of data sharing or exchange at the facilities.

Only 16% mentioned that they were not aware while

20% were neutral. Although there were data sharing

or exchange guidelines, 45% of the respondents

disagreed that the existing ICT infrastructure was

good enough to support healthcare processes. A lot of

investments had been made in infrastructure

including hardware, internet infrastructure, power

availability and network infrastructure. At the time of

the study, it was mentioned that the Ministry of

Health was in liaison with Uganda’s National

Information Technology Authority (NITA-U) to

connect most of the healthcare facilities to the

national backbone infrastructure.

It was also reported that the Government of

Uganda had developed several interoperability

Figure 1: Perception of Coding Practices by Health Workers.

10%

39%

10%

20%

81%

70%

41%

0% 10% 20% 30% 40% 50% 60% 70% 80% 90%

I classify health data (diseases, procedures) while providing

services to clients

Management supports me to use classification of diseases and

procedures in performing my duties

I was adequately trained in health data (diseases, procedures)

classification

Agree Neutral Disagree

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Respondent PM02 reported that “the equipment that

was used in the country was compatible with

interoperability standards like HL7 for laboratories

and DICOM for radiology services.”

Additionally, Health Level Seven (HL7) had been

adopted in the UgandaEMR as reported by

respondent IP10. Another interoperability standard

that had been tested is the Open Health Information

Mediator (OpenHIM). “The openHIM standard was

tested and has worked for the exchange of some of the

viral load data between the EMRs and the viral load

systems” respondent PM01.

Although the HL7, Digital Imaging and

Communications in Medicine (DICOM) and

OpenHIM interoperability standards did exist, only

35% of the respondents mentioned that the adopted

EHIS were compatible with each other.

The Ministry of Health had also developed

systems that were interoperable like mTrac and

DHIS2 which have been adopted at the national level

to manage health information. These were

communicating to each other as described by

respondent IP01. “We have data that is collected

weekly on papers. We also have electronic

components of data collection using SMS and

Android application called mTrac. This data is hosted

on DHIS2 server once it is collected. The data that is

collected from SMS and android application ends up

in DHIS2.” – IP01

Although the Ministry had not explicitly adopted

health information exchange standards, some

interoperability standards were implemented in

isolated EHIS as reported by respondent IP01.

3.1.3 Communication Infrastructure /

Technologies Standards

Regards communication infrastructure/technologies

standards, 46% of the respondents mentioned that the

facility could afford to establish and maintain the

required ICTs, while 39% disagreed. On internet

connectivity, only 11% of the respondents mentioned

that the internet connectivity was very good at the

health facilities, 22% mentioned that it was stable but

slow, whereas over 43% mentioned that they had

variable connectivity (on and off). Besides, only 32%

of the respondents agreed that the facility had

guidelines for communication and access to

electronic health records. The standards for electronic

communication infrastructure, as adopted from

international standards are shown in table 1.

The existing ICT and communication networks in

health facilities were mostly used to support healthcare

processes as mentioned by 53% of the respondents.

The quality of the infrastructure was in question as only

41% reported that it was good enough to support

healthcare processes. Respondent HSL4-15 reported a

constant problem of power and internet challenges to

be affecting the quality of the infrastructure.

Respondent HSL4-07 also mentioned that they still had

limitations in accessing the internet in their health

facility. Adequacy of the hardware and application

technologies was poorly ranked as only 38% agreed

that the facility had adequate hardware and application

technologies to support healthcare processes. Whereas

the adequacy of ICT infrastructure was 38%, more

respondents (46%) mentioned that the facility could

afford to establish and maintain required ICTs.

Table 1: Electronic Communication Infrastructure Standards.

Category Standard

Health Informatics US ISO 17090-1:2013 - Public key infrastructure - Part 1: Overview of digital certificate

services

US ISO 17090-2:2008 Public key infrastructure - Part 2: Certificate Profile

US ISO 17090- 3:2008 - Public key infrastructure - Part 3: Policy management of certification

authority

Data Management and Interchange US ISO IEC 9075-2: 2011 - Information Technology – Database Languages - SQL - Part 2:

Foundation (SQL/Foundation)

US ISO IEC 9075-11: 2011 - Information Technology – Database Languages - SQL - Part 11:

Information and Definition Schemas (SQL/Schemata)

US ISO IEC 9075-14: 2011 Information Technology – Database Languages - SQL - Part 14:

XML –Related Specifications (SQL/XML)

Telecommunications and Information

Exchange between Systems

US ISO IEC 9594-8:2008 - Information Technology - Open Systems Interconnection - The

Directory: Public-key and Attribute Certificate Frameworks

Information and Documentation US ISO IEC 15489-1:2016 - Records Management - Part 1: General

US ISO 13008:2012 - Digital Records Conversion and Migration Process

US 1717:2017 - Implementation Guidelines for Digitization of Records

Information Technology Service

Management

US ISO IEC 20000-1: 2018 - Information Technology – Service Management - Part 1: Service

Management System Requirements

Guidelines and Standards for Acquisition of Information Technology Hardware & Software

for Government Ministries, Departments and Agencies

Establishing the State of Practice about Data Standards in Monitoring Healthcare Interventions for HIV in Uganda’s EMR-based Health

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Figure 2: Perception of eHealth Security at Health Facilities.

3.1.4 eHealth Data Security and Privacy

71% of the respondents agreed that they were aware

of the guidelines for privacy and personal identifiable

data in their settings whereas only 8% disagreed. Two

information security standards were adopted by

NITA-U: US ISO IEC 27007: 2011 and US ISO IEC

27032: 2012.

The perception of health workers towards eHealth

security was assessed as shown in figure 2. Over 80%

of the respondents noted that the health data that they

were responsible for was valuable, and 64%

mentioned that information security

controls/guidelines were implemented to ensure that

health data were kept secure. Only 35% of the

respondents mentioned that their health facilities

often faced health data security threats, 46% felt that

the security controls/guidelines implemented were

sufficient. 63% of the respondents reported that the

existing ICTs were secure and protected the client’s

privacy and information, and that the available

guidelines fully addressed security issues, access

privileges and or privacy concerns.

53% of the respondents disagreed that there was a

sense of insecurity in using ICT in health. Some of

the security measures that had been implemented

were: each authorised operator had a secret password

that was updated every 3 months and they were held

responsible in case it was used by someone

unauthorized in case they did not report this prior;

various levels of security were deployed, including

authenticating users who attempted to access these

resources, firewalls; some HDPs had their own

security policies and all new staff had to be trained on

them as mentioned by respondent PM07.

3.2 eHealth Standardization Process

The eHealth standardisation process refers to the

process of utilising best practices and principles for

managing eHealth data and processes in a uniform

manner across various levels of the health system

(Kimaro and Twakyondo, 2005). In this sub-section,

we present: eHealth standards adoption, adaptation

and contextualization process; standardisation

support provided to the Ministry of Health; and

challenges affecting the standardisation process.

3.2.1 eHealth Standards Adoption,

Adaptation and Contextualization

Process

Regarding facility assessment for ICTs, only 38% of

the respondents agreed that an assessment was done

for readiness to adopt ICT for healthcare processes.

At the time of study, the Ministry had adopted

eHealth guidelines for provision of its health services.

However, only 35% of the respondents agreed that the

ICT adoption and implementation decision processes

were properly streamlined. The guidelines for

eHealth were specific for health information

exchange, telemedicine and digital health

implementation as mentioned by respondent PM01.

The process of developing and/or reviewing

standards in Uganda is inter-sectorial and involves

various Ministries, Departments and Agencies

(MDAs). This was well elaborated by respondent

PM05, and can be summarised into seven stages as

identification, preparatory, committee discussing

draft, public enquiry, confirmation, approval and

declaration of mandatory standards.

The Ministry of Health developed the eHealth

Policy to guide eHealth standards implementation as

mentioned by respondent PM03: “the Ministry had a

participatory way in which it developed standards,

14%

43%

16%

23%

22%

20%

31%

29%

80%

35%

64%

46%

48%

0% 10% 20% 30% 40% 50% 60% 70% 80% 90%

The health data that I am responsible for is valuable

My health facility often faces health data security threats

Information security controls/guidelines have been implemented to

ensure that health data is kept secure

The security controls/guidelines that have been implemented are

sufficient

I feel sufficiently supported by top management in regard to

information security

Agree Neutral Disagree

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Figure 3: Perception of eHealth Adoption and Standardisation.

guidelines and Standard Operating Procedures.

There were consultative meetings in the beginning,

development process and a validation process that

took place before adaptation. The guideline had to go

through the bureaucracy of the Ministry. We have

technical working groups that must approve it for use.

It must be presented to the monitoring, evaluation and

budget technical working groups to understand what

the implication will be in terms of resources. Then it

is pushed forward to the HIPA, which is one of the

approving bodies and then to senior management for

final clearance. Once senior management has cleared

it, it can then be put into standard use” – PM03

Only 29% of the respondents at health facilities

agreed that there was team work and collaboration

with the Ministry of Health personnel and

stakeholders drawn from outside the health facility

when developing standards, and only 20% agreed that

the team composition was drawn from all facility

departments as shown in figure 3.

45% of respondents disagreed that the meeting

was structured and could be conducted by any person.

Over 61% mentioned that they did not participate in

determining guidelines for ICT to be used at health

facility. For some who were involved, the

participation was about assessing and acknowledging

draft documents as mentioned by respondent HSL2-

06: “Recently, I was part of the team that came up

with the M&E health plan for the country…...we

basically gave technically support……. They first

make the draft and we come in to assess and

acknowledge what they have done” – HSL2-06

Although the participation at the facility level was

low (14%), a respondent from the Ministry of Health

elaborated that health workers were involved in

consultations and validation of the documents.

3.2.2 Standardisation Support Provided to

the Ministry of Health

Resources for developing guidelines were not

sufficient as mentioned by 40% of the respondents.

HDPs like United Nations Children's Fund and World

Health Organisation (WHO), provided funding

directly to the Ministry of Health to support the

standardisation process. The catalytic funds were

used to facilitate initial scoping to know the extent of

need and make a case for development of standards.

43% of the respondents disagreed that health

workers have the required level of literacy to use ICT

in health. HDPs provided technical support to the

Ministry of Health during the standardisation process

including the provision of standards and guidance

documents as mentioned by respondent IP02:

“provide standards from other settings/countries,

that can be used for benchmarking and best

practice.” – IP02.

Some HDPs had well-established systems that the

Ministry of Health used for benchmarking as reported

by respondent IP07: “Ministry of Health and other

stakeholders already picked interest in Infectious

Diseases Institute’s in-house developed eHealth

platforms - ICEA… The Ministry of Health has on

several occasions engaged Infectious Diseases

Institute teams in discussions aimed at understanding

and possibility adopting some of our eHealth

platforms for nationwide use” – IP07.

52%

66%

61%

42%

45%

33%

40%

45%

28%

23%

25%

37%

35%

38%

45%

40%

20%

11%

14%

20%

29%

15%

14%

0% 10% 20% 30% 40% 50% 60% 70%

I participate in the decision process when planning the facility IT networks

I participate in the design/procurement of IT systems for the health facility

I participate in determining guidelines for ICT to be used at health facility

A team is constituted to develop, select or review guidelines for ICT

The team composition is drawn from all facility departments

The team work in collaboration with MoH personnel and other stakeholders

drawn from outside the facility

The team has adequate time and resources to develop the guidelines

The team meeting is structured and can be conducted by any person including

non-professionals team meeting facilitators

Agree Neutral Disagree

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3.2.3 Challenges of the Standardisation

Process

Insufficient Participation of Key Stakeholders: Only

14% of the respondents at health facilities mentioned

that they participated in determining the guidelines

for ICT to be used at health facility level. Similarly,

at national level, respondent PM05 reported that there

was insufficient participation of key stakeholders

while conducting review meetings or workshops and

proposed vigilance by the Ministry of Health.

Inadequate Technical Expertise: Uganda did not

have adequate technical expertise in the field of

public health informatics. Only 35% of the

respondents agreed that healthcare workers had the

required level of literacy to use ICT in health. Further,

only 47% of the respondents agreed that management

at the health facility was aware of the complexity of

the changes that would result from the adoption of

eHealth in their work practices.

Financial Constraints: Only 15% of the

respondents at health facility level agreed that

standards development or review team had adequate

resources to develop the eHealth guidelines. The

same was echoed by respondent PM05 at national

level that a significant amount of money was needed

for implementing the standards.

Weak Leadership: There was a challenge in the

leadership structure of deciding which innovations

were to be considered or not as mentioned by

respondent IP01. The complexity of multiple

innovations led to having multiple systems with

different standards that could not be interoperable.

There were challenges of individuals or agencies with

interests of moving their agenda forward and not

abiding to the implementation of standards. The weak

leadership resulted into siloed applications as

mentioned by M01: “Our biggest challenge has been

siloed implemented applications at disease level that

are not even speaking to each other…. most of these

solutions are not also sustainable…...this is because

HDPs implement systems without following the

structures put in place for approval.” – M01. The

siloed systems were also facilitated by lack of

monitoring systems in place as noted by respondent

R101. This finding aligns with the fact that only 33%

of the respondents agreed that implementers adhered

to guidelines when implementing ICT in healthcare.

3.3 Compliance to Monitoring

Implementation

3.3.1 Governance Structures

As shown in figure 4, 46% of the respondents

mentioned that there was a strong eHealth governance

at health facility level whereas 29% disagreed.

Regarding eHealth expertise at health facilities,

42% of the respondents mentioned that there is

adequate expertise while 34% disagreed. The

expertise matches with the finding that only 28% of

the respondents reported that they were trained on

how to use the eHealth applications that they used.

The skills gaps are covered by HDPs through training

and mentoring.

Only 36% of the respondents agreed that they

were involved in decision making of eHealth

development whereas over 43% disagreed. In line

with the same issue, only 32% mentioned that the

facility had guidelines for communication and access

to electronic health records. Some facilities had

implemented their own measures as described by one

of the respondents: “We have something which is

quite brief, mainly for guiding the workers on

guarding against misuse of the ICT. We even have a

security system whereby you cannot go to other

websites….” – HSL3-02.

Majority (63%) of the respondents agreed that the

existing ICTs were secure and protected clients’

privacy and information. Physically, there were

security personnel to guard the equipment as

Figure 4: Governance Structure of eHealth at Health Facilities.

43%

34%

29%

21%

23%

25%

36%

42%

46%

0% 5% 10% 15% 20% 25% 30% 35% 40% 45% 50%

I am involved in decision making concerning development of eHealth

There is adequate expertise in eHealth at the health facility

There is a strong eHealth governance at the health facility

Agree Neutral Disagree

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Figure 5: Compliance to eHealth Standards at Health Facilities.

mentioned by respondent HSL4-24 and M09

respectively: “we have security personnel who are

responsible for guarding the facilities, the rooms are

lockable and access is limited to a few people”-

HSL4-24, “the server environment is securely locked

with only finger print access” – M09. The security

measures that had been put in place were adopted

from the Ministry of ICT. The government also had a

role in ensuring that there was secure exchange of

information by providing a public key infrastructure.

3.3.2 Compliance to eHealth Standards and

Guidelines at the Health Facility and

National Levels

Familiarity of the guidelines that govern ICT was at

39% among respondents as shown in figure 5.

Similarly, only 39% mentioned that there was an

established structure that monitored compliance to

eHealth standards. This showed non-awareness of the

compliance structures as there were monitoring and

evaluation plans in every guideline as mentioned by

respondent PM01: “For each of those guidelines, we

have a monitoring and evaluation plan on how we are

going to implement and monitor compliance with

those guidelines” – PM01.

Only 36% agreed that they were involved in

eHealth planning and decision making. Respondent

HSL4-10 mentioned that no consultations were done

before bringing systems to the facility: “they have to

come to the facility and do an assessment of what is

specifically needed. Most times we find everything

just brought without consulting the facility on what is

needed.” – HSL4-10.

Only 32% of the respondents agreed that there

were guidelines for establishing and implementing

ICT at health facilities. Similarly, only 33% agreed

that there were guidelines for monitoring the use of

ICT and that implementers adhered to the guidelines

when implementing ICT in healthcare. The same

challenge of non-adherence to guidelines when

implementing ICT was reported at national level by

respondent, PM03: “someone goes and develops a

system without consulting us and knowing what

problem we have and then tries to force us to use the

system” – PM03. Some measures for monitoring

compliance had been devised by health institutions.

Access to some sites were be blocked as mentioned

by HSL3-02; “…you are blocked if you try to access

certain sites which you are not supposed to.” –

HSL3-02. The effectiveness of the measures in place

can be backed up by the fact that 64% of the

respondents agreed that information security

controls/guidelines had been implemented to ensure

that health data were kept secure.

Health Development Partners had played a crucial

role in monitoring compliance to standards. In the

absence of an independent arm of monitoring and

evaluation in the government, HDPs support the

Ministry of Health as mentioned by respondent

HSL2-06: “The government does not have an

independent arm attached to monitoring and

evaluation. The health development partners bring in

their M&E systems.” – HSL2-06.

Generally, each of the Ministry guidelines had a

section of monitoring and evaluation, particularly on

implementing and monitoring compliance as

mentioned by respondent PM01: “For each of the

guidelines, we have a monitoring and evaluation plan

on how we are going to implement and monitor

compliance.” – PM01.

Additionally, technical working groups approve

information systems in Uganda before they are

deployed: “The technical working group of the

25%

22%

28%

26%

43%

42%

45%

37%

39%

32%

33%

35%

0% 5% 10% 15% 20% 25% 30% 35% 40% 45% 50%

There are guidelines for establishing/implementing ICT at the health facility

There are guidelines for monitoring use of ICT at the health facility

Implementers adhere to guidelines when implementing ICT in healthcare

There is an established structure that monitors compliance to eHealth

standards

This facility collaborates with other facilities in monitoring compliance to

standards

Users of ICT at the facility are familiar with guidelines that govern its use

Agree Neutral Disagree

Establishing the State of Practice about Data Standards in Monitoring Healthcare Interventions for HIV in Uganda’s EMR-based Health

Information Systems

207

Ministry of Health has sub-committees that sit and

evaluate these systems before they (systems) are

approved and implemented for the case of monitoring

ICD-11” – PM01.

The NITA-U conducts assessments of

implemented systems as part of monitoring to ensure

that they complied with standards as mentioned by

respondent PM04: “NITA-U also conducts

assessment to compliance to standards once systems

have been implemented.” PM04.

3.3.3 Challenges of Monitoring Compliance

Inadequate Resources: Only 15% of the respondents

agreed that the standards development team had

adequate time and resources to develop standards or

guidelines. Besides, only 35% of the respondents

agreed that health service providers had the required

level of literacy to use ICT in health. Respondent

IP02 supplemented by saying that ICT skills related

to eHealth are inadequate, both in terms of the

numbers and skills mix/set. Respondent PM04 also

commented about the eHealth skills of the health

workers and mentioned that there was inadequate

integration of eHealth skills into existing health

professional training curricula. Moreover, only 41%

of health workers mentioned that they were

adequately trained in health data classification.

Financial Constraints: Only 38% agreed that

health facilities and Ministry of Health had adequate

financial capacity to support ICT, yet it was

expensive to hire consultants as mentioned by

respondent M05.

Non-Involvement of Stakeholders: At the health

facility level, only 36% of the respondents agreed that

they were involved in eHealth decision making. At

the national level, the technical MDAs would only

provide support; however, the Ministry of Health had

not taken the lead in enforcing compliance as reported

by respondent PM04. Moreover, only 52% agreed

that management takes an active role in preparing

plans for implementing eHealth.

Non-operational Regulatory Frameworks:

Although health facilities had guidelines with quality

parameters to regulate implementation as mentioned

by 76% of the respondents, implementation was a

challenge because of the lack of regulatory frame-

works as mentioned by respondent PM05: “once the

National Standards Council has declared a Ugandan

Standard, at that stage, it is still voluntary to use the

standard because of the regulatory framework that

we have in this country.” PM05. Respondent R101

also noted the inability to operationalise the

regulatory framework currently in place.

4 DISCUSSION

4.1 Existence and Current Practice of

eHealth Standards

In health facilities, it has been reported that the ICD

standard has been used to a lesser extent to record

morbidity and mortality statistics (Ministry of Health,

2014). In our study, 81% of the respondents noted that

they classified health data while providing services to

clients. The ICD standard is the foundation for the

identification of health trends and statistics globally,

and the international standard for reporting diseases

and health conditions (WHO, 2020).

One of the standards that is used to code health

research data is MedDRA). This is a clinically

validated international terminology for medical

products used by regulatory authorities (MedDRA,

2015). One advantage of the MedDRA standard is

that it can be mapped to SNOMED (Banda et al.,

2016; Bousquet et al., 2019; Yuksel et al., 2016).

Inefficient EHIS for public health surveillance are

partly as a result of inability of lack of interoperability

(Celi et al., 2017; Greenwell and Salentine, 2018).

Yet poor coding processes can damage also

information quality (Teixeira et al., 2013).

Information systems in public health should ensure

greater quality and efficiency, not only in the

management of health institutions, but also in

patients’ treatment (Carvalho et al., 2016). Efforts are

in place to have a comprehensive approach to an

integrated and efficient data collection process

important to public health (Health Enabled, 2017;

(Kuperman et al., 2013; WHO, 2015).

Data is a major challenge in the information

security (Aggarwal et al., 2013). Data security refers

to the assurance of data and its important assets like

tools and equipment for its gathering, data storage and

the transmission process (Whitman &Mattord 2009).

Standards decrease health workers’ concerns over

patient data safety and professional liability

(Benavides-Vaello et al., 2013; Jennett et al., 2004)

and thus enabling ease of work.

Although many of the electronic communication

infrastructure standards are not direct for public

health informatics, they can still be adopted or

customised for the health sector. This is exemplified

by NITA-U in Uganda adopting international ICT

standards. NITA-U also has national guidelines and

standards for acquisition of information technology

hardware and software for government MDAs that

can be readily adopted for the health sector and most

especially HIV services.

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Interoperability of national information systems

ensures sharing of valuable information across the

government systems (Mandl & Kohane., 2012;

Terhune et al., 2009) to collectively support online

improved service delivery (McDonnell, 2012). A

number of international certification and standards

bodies work towards developing standards to address

interoperability issues including; International

Standards Organization (ISO), European Committee

for Standardization (CEN), HL7, OpenEHR and

IEEE 11073-20601-2008 (Trigo et al., 2013).

Opportunities to improve healthcare by reusing data

are often missed due to the limited interoperability of

eHealth solutions (Beerenwinkel et al., 2018). An

interoperability framework provides for the specific

set of standards, protocols, procedures, best practices

and policies to improve digital solutions (Barbabella

et al., 2017; Lamine, 2017).

In order for information management to have

meaning across health systems, there has to be a

common language and format across all facilities

(Braa et al., 2017). For health facilities transitioning

from paper to electronic systems, the common format

provides an opportunity to move from errors in paper-

based record-keeping that can affect the delivery of

safe quality care (The Joint Commission, 2011).

Standards have to be implemented in health

information systems to achieve interoperability,

portability and data exchange. Yet, systems that

conform to different standards cannot communicate

with one another (Hammond & Cimino, 2006).

Oderkirk (2017) also noted multiple standards as a

challenge to standardisation. This can be caused by

siloed systems having different standards.

Information technology standards, including

standards for messaging, content and coding,

networks, electronic data interchange, and electronic

health records, are important to healthcare

information systems.

4.2 eHealth Standardization Process

and Compliance to Monitoring

Implementation

Uganda made advancement in utilizing information

technology to report aggregated data at national level

in 1997 through the introduction of electronic Health

Management Information System (MoH, 2017).

Consequently, the eHealth framework was put in

place including the ICT Policy (Ministry of ICT,

2011), eHealth Policy (MoH, 2016) and the five-year

eHealth Strategic Plan. These policies are

instrumental in shaping the eHealth governance in

Uganda’s health system.

Successful EHIS interoperability depends on the

presence and use of widely adopted data exchange,

security, and messaging standards (Measure

Evaluation, 2019). A standard should be approved by

a recognized standards development organization, or

it should have been accepted by the industry like

International Telecommunications Union (ITU), ISO,

WHO or a national standards body (Celi, et al., 2017).

True data interoperability requires the development

and implementation of standards and clinical-content

models and frameworks (Begoyan, 2007; Goossen et

al., 2010) for the unambiguous representation and

exchange of clinical meaning (Knaup et al., 2007).

The findings indicate that there are scanty

practices and/or implementation of the eHealth

standards. The same was also found out in Tanzania

where Mukasa et al (2017) noted absence of health

information system standards control mechanisms to

be the cardinal challenge of standardizing

information systems for integrated TB/HIV services.

Insufficient participation of key stakeholders and

inadequate resources as reported in this study were

also identified as challenges to the standardisation

process by Mukasa et al., (2017). During the design

of EHIS, a holistic service perspective can leverage

the full potential to health information systems.

5 CONCLUSIONS

This study investigated the state of current practices

and challenges to data and interoperability standards

in monitoring HIV healthcare interventions in

Uganda’s EMR-based health information systems.

The key data standards practices included MedDRA,

DSDM, ICD and HL7 which positively impacted on

the monitoring of HIV data management and

exchange among healthcare interventions in various

EHIS. The study also identified challenges to data and

interoperability standards compliance monitoring that

included insufficient participation of key

stakeholders, inadequate technical expertise,

financial constraints and weak leadership or

governance. These challenges are barriers that

adversely affect successful eHealth standards

implementation in EHIS. As such our future work is

to progress with designing of contextual data and

interoperability frameworks to provide for the

specific set of standards, protocols, procedures, best

practices and policies that can be used to improve

monitoring of HIV healthcare interventions for

Uganda’s EMR-based health information systems.

Establishing the State of Practice about Data Standards in Monitoring Healthcare Interventions for HIV in Uganda’s EMR-based Health

Information Systems

209

ACKNOWLEDGEMENTS

The authors acknowledge the Government of the

Republic of Uganda through Makerere University

Research and Innovation Fund for sponsoring the

study; as well as the study participants at national and

sub-national level in Uganda’s health system.

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