A Socio-technical Review of Five National Health
Information Systems in Ireland using Agreed National Standards
Sarah Craig
Health Research Board, Dublin, Ireland
Keywords: Health Information Systems, Standards, Ireland.
Abstract: This paper presents a review of five national health information systems in Ireland using a set of guiding
principles and information governance standards that have been nationally agreed by the health information
regulatory body there. The review uses a socio-technical approach to examine three dimensions of these
systems; policy, infrastructure and people. The review was undertaken using documentary analysis of
written materials about the systems from both primary and secondary data sources. The findings show that
progress has been slow in the development of health information policy in Ireland and as a result, systems
like those reviewed vary in how nationally agreed standards and principles have been applied. The paper
concludes the need for a more consistent approach to national health information systems like those
reviewed using agreed national standards.
1 INTRODUCTION
This paper presents a review of five national health
information systems using a set of guiding principles
for health and social care collections (HIQA, 2013a)
which were set by Ireland’s health information
regulatory body, the Health Information and Quality
Authority (HIQA) and which have since become
agreed information management standards (HIQA,
2017a). The research applies a socio-technical
approach to the examination of the systems using the
principles set out which are grouped for the purposes
of the research into three dimensions; policy,
infrastructure and people (Table 1).
Table 1: Dimensions and National Standards.
Policy
Legislation/Standards
Infrastructure
Governance Structures
Statement of Purpose
Use of Information
Data Quality
Information Governance
People
Use of Resources
Workforce
The principles were agreed nationally through
expert collaboration and public consultation and are
based on robust international evidence in this area
(Canadian Institute for Health Information, 2009;
Canadian Institute for Health Information, 2017).
The research question is to what extent, if at all,
do the HRB’s systems apply the HIQA principles
and standards in their operation?
Documentary analysis was undertaken of written
materials for each of the five health information
systems including primary sources such as protocols
for data collection and collation, data validation and
reporting as well as secondary sources such as
evaluations and reviews.
The paper highlights the need for standards that
are nationally agreed and that are in line with
international best practice.
2 BACKGROUND TO THE
SYSTEMS
The five systems reviewed are managed by the
Health Research Board (HRB) a public service body
under the remit of the Department of Health in
Ireland. They collect data in the areas of drugs and
alcohol, disability and mental health. Data
collection began as far back as the 1960s in the
mental health area, followed by drug treatment and
disability data systems in the 1990s and drug-related
deaths in 2005. Appendix 1 presents a summary
316
Craig, S.
A Socio-technical Review of Five National Health Information Systems in Ireland using Agreed National Standards.
DOI: 10.5220/0006542503160321
In Proceedings of the 11th International Joint Conference on Biomedical Engineering Systems and Technologies (BIOSTEC 2018) - Volume 5: HEALTHINF, pages 316-321
ISBN: 978-989-758-281-3
Copyright © 2018 by SCITEPRESS – Science and Technology Publications, Lda. All rights reserved
overview of the five systems. Twenty people are
employed across the five systems and the annual
budget is around €1.2 million. All of the systems
generate timely and accurate data at a national level
to assist with service planning and monitoring of key
policies in the areas identified as well as reporting at
national, EU and international levels.
3 POLICY DIMENSION
Progress in relation to having a well-developed
health information policy framework nationally in
Ireland has been slow. The experience of the
development of the five HRB systems reflects how
developments in health information in Ireland have
proceeded; information systems generally come into
being on a piecemeal basis in response to a
particular information need rather than as part of a
nationally agreed approach. It is only very recently
that there has been some recognition of the need for
a more coherent framework in this area (see HIQA,
2014).
The slow pace of development of health
information policy in the last ten years in particular
has had an influence on the development of the HRB
systems. There has been little or no progress on the
legislative framework for health information nor on
the necessary infrastructure outlined as part of a
National Health Information Strategy (Department
of Health and Children, 2004). As a result the 5
HRB systems have not had the benefit of an agreed
policy framework but have developed as stand-alone
systems with differing aims and objectives.
3.1 Legislation and Standards
Forthcoming legislation for Ireland on health
information was announced in 2004 (Department of
Health and Children, 2004). However, it wasn’t
until 2014 that legislation for one part of the Irish
legislative framework – a unique identifier for health
- was published (Government of Ireland, 2014). As
is the case in other countries, the lack of a unique
system of identification hinders the HRB in its day-
to-day data processing work. It also means that
linking systems either in-house or with any
externally-held data sources is not possible. This
means that systems cannot be integrated with other
health and social care data sources.
There has been a significant push in other
countries for greater standardisation of health and
social care data. This is largely to enable
interoperability of systems and opportunities for
maximising the use of health data. In the Irish
context, this drive for standardisation has been
lacking. However, HIQA has taken a lead role in
this area and since 2010 there has been an increasing
volume of standards-based publications designed to
provide guidance to organisations like the HRB (see
HIQA, 2012; HIQA, 2015).
Within the HRB as the five systems developed,
there was very little consideration given to
interoperability and, as a result, there is now
significant variation in how data are collected. Over
the last few years, some attempts have been made to
address this using HIQA’s nationally agreed
demographic dataset as a guideline (HIQA, 2013b).
There is still some way to go in streamlining across
systems but standards set out by HIQA, which are
based on best practice, have been beneficial to the
organisation is its recent work.
3.2 Assessment of Policy Dimension
The Irish policy context in the health information
area is characterised by fragmentation and a lack of
strategic planning about how health data use can be
maximised. The establishment of HIQA, in 2007 as
a regulatory body for health information, however,
has resulted in more recognition of the need for a
standardised approach. Before this, the HRB’s
health information systems developed separately
with little or no reference to systems already in place
either in the HRB or external to it. Key areas in
which robust health information policy could have
had most impact on the HRB’s systems include
having legislation for a unique identifier and
nationally agreed standards for health data.
4 INFRASTRUCTURE
DIMENSION
Strategic developments in health information require
investment in infrastructure - hence five of the eight
guiding principles set out by HIQA (2013a) cover
the infrastructure dimension and address issues such
as governance, use of data and data quality. Each of
these is described below in relation to the HRB’s
five systems.
4.1 Governance Arrangements
Good governance arrangements are increasingly
regarded as crucial to the success of health
information systems (National Health Service,
A Socio-technical Review of Five National Health Information Systems in Ireland using Agreed National Standards
317
2015). HIQA (2017a: 30) recommends that each
health information system ought to have
‘governance arrangements to ensure that the current
and future needs of the national health and social
care data collection are met’. Table 2 sets out the
current governance arrangements for the HRB’s
national health information systems.
Table 2: Governance Arrangements for the HRB’s NHIS.
System
Governance arrangement
NDTRS
None
NDRDI
National Steering Committee
comprising all stakeholders
NIDD
National Committee comprising all
stakeholders
NPSDD
National Committee comprising all
stakeholders
NPIRS
None
Source: Health Research Board, 2014.
Three of the five systems have formalised
arrangements in place to bring together key
stakeholders on a regular basis to consider the
strategic direction of the system and to make
decisions about any required changes. The other
two systems, the NDTRS and NPIRS do not have
formal structures in place for monitoring. From a
governance perspective this is a weakness, and it
was highlighted as such in an independent review of
the HRB’s work in 2014: ‘because there is a mixed
pattern of steering groups and opportunities for
research user and stakeholder input to each of the
five database operations, or absence of same, each
database should have a suitable stakeholder group’
(Health Research Board, 2014: 13). Where
information systems have national governance
structures and arrangements that are active and
effective this has a positive effect on the data as it
allows for a process of engagement with
stakeholders and contributes to the
comprehensiveness and relevance of the data.
4.2 Statement of Purpose
Each of the five systems managed by the HRB has a
publicly available statement of purpose, setting out
how the objectives of each system are achieved (see
Table 3). The statement of purpose has been agreed
by those involved in the governance structures that
are in place to oversee the systems (where they
exist). The statement is maintained by the staff
responsible for managing each system and is
reviewed regularly to ensure that it is fit-for-
purpose. All statements are published in HIQA’s
catalogue of health and social care data collections
(HIQA, 2017b).
Table 3: Statements of Purpose for the HRB’s NHIS.
NIDD
The NIDD is a service-planning tool
designed to capture data on the usage of
and need for specialist disability services
among people with intellectual disability.
NPSDD
The NPSDD is a service-planning tool
designed to capture data on the usage of
and need for specialist disability services
among people with physical and sensory
disability.
NDTRS
The NDTRS was established as an
epidemiological database on treated drug
and alcohol misuse in Ireland. It records
incidence of drug and alcohol treatment.
NDRDI
The NDRDI provides epidemiological
monitoring of cases of drug- and alcohol-
related deaths, and deaths among drug
users and among alcoholics in Ireland.
NPIRS
The NPIRS is a psychiatric database,
which provides detailed information on
all admissions and discharges to in-
patient psychiatric services in Ireland.
Source: HIQA, 2017b.
4.3 Use of Information
Each of the five systems managed by the HRB holds
a large volume of data that are used for a wide
variety of reporting. Reports for each system are
provided annually to the Department of Health and
for two of the systems, the NDTRS and NPIRS,
quarterly reports on performance indicators are
produced for the health care delivery body the HSE.
HIQA (2017a: 18) suggests that it is essential to
‘promote, encourage and facilitate the use of the
data’. This is achieved by the HRB in three ways:
first, publications from each of the systems are made
available annually in hard copy and electronic
format; second, analysis is undertaken on extracted
data on the basis of requests received from service
planners, policy makers, academics and researchers
as well as the general public and third, the HRB
provides data through a number of portals such as
the Irish government’s Central Statistics Office
(www.StatCentral.ie) so that secondary analysis of
data is made possible. The HRB received 313
requests for data between 2016 and 2017. Most of
the requests were for service planning purposes.
HEALTHINF 2018 - 11th International Conference on Health Informatics
318
4.4 Data Quality: Audit and Evaluation
To ensure data quality, a process of audit and
evaluation needs to be included as an integral part of
any information system (see Canadian Institute for
Health Information, 2017). Over the last number of
years, the HRB has given some attention to this area
of its work and the organisation’s latest strategy
proposed that there would be investment in
evaluation and audit of health information systems
within the HRB during the strategy period (see
Health Research Board, 2016). Previously, the level
of activity overall in evaluation and audit has,
however, not been high. In the last five-year period,
only one of the five systems was formally evaluated
and in the last ten-year period, only one other was
audited.
4.5 Information Governance
Information governance is defined as effective
arrangements that will protect the rights of people
about whom information is held (HIQA, 2017a).
With regard to information governance in the HRB’s
five information systems, there is no one-size-fits-all
model. Across the five systems, the nature of
relationships between those that are providing
services and the HRB to whom they return data is
complex. Staff from the HRB facilitate data
providers in three ways; 1) the provision of detailed
protocols that set out how data should be recorded;
2) ongoing training and refresher training and 3)
contact with senior staff within the HSE about the
return of data. Work is underway to put in place
formalised agreements with data providers to
support the supply of quality data. Key aspects of
governance centre on the information being treated
securely and confidentially and ensuring that those
registered can access their own data. Consent is
sought from individuals for three of the five
systems; two of these seek explicit consent and the
other involves implied consent.
All of the systems’ protocols address the issue of
confidentiality. This is to ensure that the data are
provided only to those stated and only for the
purposes stated. These protocols are reviewed
annually. Individuals seeking access to their own
data are referred to the local HSE office, as the HRB
does not hold personal details and so identification is
not possible. Over time, the HRB systems have been
guided by data protection legislation as well as the
views of service users and those providing services
in terms of dealing with sensitive data. Changes will
come into effect in 2018 as the EU General Data
Protection Regulation becomes law.
4.6 Assessment of Infrastructure
Dimension
The key aspects of infrastructure that have been set
out in the HIQA guiding principles and standards
vary across the HRB’s five systems. There is no
consistent approach to governance and
accountability. Processes and procedures are
reviewed regularly to improve data processes but
only two of the systems have been evaluated to
assess the quality of their data. More effective use
of data has developed over time, as demonstrated by
the many requests for information from those
involved in day-to-day service planning. Secondary
analysis of data has been developing as a key area of
the HRB’s work in information systems but more
effort is needed to address the structural issues that
prevail in relation to data access and linkage. All of
the HRB’s systems have made changes to address
the issue of information governance with a view to
protecting the confidentiality of the individuals
about whom data are held, and security is an
important aspect of the day-to-day work within the
HRB.
5 PEOPLE DIMENSION
5.1 Workforce, Skills and Investment
One of the factors recognised in the literature as key
to successful health information systems is the staff
that work on and continually evaluation such
systems (Yusof et al., 2008; Kushniruk and Turner,
2011; Cresswell and Sheik, 2014). Much of the day-
to-day work on the HRB systems is done by research
staff supported by database administrators/analysts.
Staff members are drawn from a range of
backgrounds and disciplines and have been recruited
largely for their expertise in the four specialist areas
in which the HRB carries out this function.
For the most part, within the HRB, teams work
on individual systems rather that across systems.
Over time, what has resulted is a silo-ed approach to
the work and limited opportunities for movement of
staffing resources between systems. This has led to
the development of a workforce that is specialised in
one area of the HRB’s work rather than a more
flexible health informatics workforce.
A Socio-technical Review of Five National Health Information Systems in Ireland using Agreed National Standards
319
5.2 Use of Resources
On foot of a review of internal processes three years
ago, the HRB made significant changes to how
staffing resources are utilised in relation to its health
information systems. The emphasis of the review
was the move from a system of organisation where
staff work on only one information system to one in
which they could use their skills across all five of
the information systems; and 2) the development of
an ICT solution within the HRB that would provide
a single technological platform for the five systems
to enable staff working in this area to develop a core
set of computer and analytical skills that are more
widely applicable within the organisation.
These two factors represent the critical success
factors needed for the ongoing operation of the
HRB’s health information work and by implication,
better use of its existing resources. Both of these
objectives were identified as core to the integration
and streamlining of the health information systems
work, which is consistent with the overall
framework for health information here in Ireland
(HIQA, 2017a) and internationally (OECD, 2013).
5.3 Assessment of People Dimension
The research shows that ICT redevelopment and
staff reorganisation were two key change areas for
the HRB health information systems. The socio-
technical approach suggests that both of these
changes are inextricably linked; staff need to be part
of the early consultation about a new ICT system
and have to be involved in all stages of its design
and development. While this takes considerable
time, it is supported by much of the literature on
socio-technical theory around the importance of
people in the development and implementation of
new ICT systems (see Goldberg et al., 2011;
Cresswell and Sheik, 2014).
The focus on a shared ICT platform for the
HRB’s five health information systems, combined
with a sharing of staff resources across the systems
is important not only for its emphasis on better use
of resources but also as a move towards an
integrated approach, which is part of the national
agenda (HIQA, 2014). As noted earlier, HIQA
identified the HRB’s work in this area as an example
of good practice (HIQA, 2014). Work is ongoing in
the roll-out of the new ICT platform training of all
HRB staff and system users is under way.
6 CONCLUSIONS
This review of the HRB’s health information
systems shows that there is a broad range of
processes at play within and between the 5 systems
in achieving their goals and objectives in the
delivery of key national health data. The five
systems vary significantly in how they collect,
organise, manage and disseminate data. Each
system developed in response to a particular
information need and without reference to the other
systems in the HRB. This mirrors what happened
nationally in relation to decisions about the
establishment of health information systems. Over
the last two to three years, however, there has been
increased recognition of the need to develop a
greater coherence within and between the five
systems. This is in line with the need to develop
integrated approaches to health information, which
is consistent with views nationally and
internationally.
In relation to policy, there is some evidence to
suggest that over the last decade, the implementation
of policy in relation to health information in Ireland
has been slow largely because it has not been
afforded any priority at national level. As a result,
the 5 HRB systems reviewed developed in a
piecemeal fashion without reference to any national
standard.
With regard to infrastructure, the HRB systems
also exhibit patchiness in how they have addressed
issues such as governance and accountability,
quality, evaluation and audit and standardisation.
An examination of the systems showed that very
little attention was given until recently to measures
designed to achieve integration within the HRB. In
this respect, the HRB’s systems can be viewed as
examples of how health information systems in
Ireland have grown up over time. The findings of
the research suggest, however, that slow progress is
being made towards a more coherent approach to the
data held by the HRB.
In relation to people, the analysis acknowledges
that changes in the use of staff resources in the HRB,
combined with the development of a new ICT
solution, have been important to the organisation’s
work in recent years. At a broader level, efforts are
in train to skill up a more generic health informatics
workforce which will be able to work across systems
and apply a generic set of skills and expertise.
This documentary analysis was organised based
on national guiding principles and standards set out
by HIQA. The experience of the HRB’s systems
suggests that there is still some way to go to develop
HEALTHINF 2018 - 11th International Conference on Health Informatics
320
best practice in relation to these principles. Their
examination in the context of one organisation
highlighted the important role they can play in
ensuring standardisation of health information
systems in the future.
REFERENCES
Canadian Institute for Health Information. 2009. The CIHI
Data Quality Framework, Canadian Institute for
Health Information. Ottowa.
Canadian Institute for Health Information. 2017. The CIHI
Information Quality Framework, Canadian Institute
for Health Information. Ottowa.
Cresswell, K., and Sheikh, A., 2014. Undertaking socio-
technical evaluations of health information
technologies. Informatics in Primary Care, 21(2), 78-
83.
Department of Health and Children, 2004. National
Health Information Strategy, Stationery Office.
Dublin.
Goldberg, L., Lide, B., Lowry, S., Massett, H.A., O'
Connell, T., Preece, J., & Shneiderman, B., 2011.
Usability and accessibility in consumer health
informatics: Current trends and future challenges.
American Journal of Preventive Medicine, 40(5),
S187-S197.
Government of Ireland. (2014). Individual Health
Identifiers Act. Dublin: Stationery Office.
Health Research Board, 2014. Appraisal of the
International Review Panel of the HRB's Strategy
2010-2014. HRB. Dublin.
Health Research Board, 2016. Research, Evidence,
Action. HRB Strategy 2016-2020, HRB. Dublin.
HIQA, 2012. National Standards for Safer Better
Healthcare, HIQA. Dublin.
HIQA, 2013a. Guiding Principles for National Health and
Social Care Data Collections, HIQA. Dublin.
HIQA, 2013b. National Standard Demographic Dataset
as Guidance for Use in Health and Social Care
Settings in Ireland, HIQA. Dublin.
HIQA, 2015. Information Governance and Management
Standards for the Health Identifiers Operator in
Ireland, HIQA, Dublin.
HIQA, 2017a Information management standards for
national health and social care data collections,
HIQA, Dublin.
HIQA, 2017b. Catalogue of National Health and Social
Care Data Collections, HIQA Dublin.
Huston, J., 2005. Information governance standards for
managing e-health information. Journal of
Telemedicine and Telecare, 11(2), 56-58.
Kushniruk, A., and Turner, P., 2011. Who's users?
Participation and empowerment in socio-technical
approaches to health IT developments. Paper
presented at the ITCH Committee, 280-285.
National Health Service, 2015. Information Governance
Bulletin No. 24. NHS. London.
OECD, 2013. Strengthening Health Information
Infrastructure for Health Care Quality Governance,
Good Practices, New Opportunities and Data Privacy
Protection Challenge, OECD. Paris.
Yusof, M., Kuljis, J., Papazafeiropoulou, A., and
Stergioulas, L. K., 2008. An evaluation framework for
health information systems: Human, organization and
technology-fit factors (HOT-fit). International Journal
of Medical Informatics, 77(6), 386-398.
APPENDIX 1: OVERVIEW OF
HRB SYSTEMS
Activity
National
Drug
Treatment
Reporting
System
(NDTRS)
• 30,000
records
annually
• Data items:
64
National
Drug-
related
Deaths
Index
(NDRDI)
• 600 deaths
annually
• Data items:
70
• 15,000
coroners files
consulted
each year
National
Intellectual
Disability
Database
(NIDD)
• 27,300
records
• Data items:
108
National
Physical
and
Sensory
Disability
Database
(NPSDD)
• Number of
records/retur
ns: 29,600
• Data items:
198
National
Psychiatric
In-patient
Reporting
System
(NPIRS)
• 38,000
records
annually -
19,000
admissions
and 19,000
discharges
• 67 sites
• Number of
data items:
28
A Socio-technical Review of Five National Health Information Systems in Ireland using Agreed National Standards
321