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Towards a National Disability Information System:
Consultative Paper from Working Group 5 of the
VFM Implementation Programme
Overview
This paper summarises proposals for taking forward the development of a National
Disability Information System in line with the Value for Money (VFM) Review. The primary
concern at this stage is to define the information to be gathered. The proposals for doing
this, draw on a review of databases currently in use in disability services in Ireland and the
outcomes of a consultation workshop held with various stake-holders on 17 September,
2015. None of the databases currently in use are sufficient to meet the information
requirements for the new models of service proposed in the VFM review. Nevertheless
much valuable learning has been obtained that can inform the development of a new
management and information system for disability services, provisionally called the National
Disability Service Register (referred to in this paper as ‘The Register’1).
A five-stage strategy is proposed to ensure systematic consideration is given to the myriad
issues involved in the development of new management and information systems. This
paper proposes key information domains to be included in the Register in line with the VFM
vision of future disability services and summarises the key principles that should underpin
the development. It identifies the levels at which information will be gathered and analysed.
It further proposes how more detailed specifications for the register could be developed and
the steps involved in making it operational. However at this stage it is premature to detail
the precise information to be gathered although that will need to be done when an
agreement has been reached on the broad parameters of the new system.
The paper is primarily written to aid consultations with stakeholders that Working Group 52
(WG5) intends to undertake in the coming weeks. Key questions are noted within each
section to guide their responses. The intention is to make the development process
transparent and participative, although it will fall to WG5 to use their judgement in deciding
on the format and content of a new management and information system. At best it would
be 2017 before any new system starts to be implemented.
Fuller details of the reviews undertaken to support the proposals are contained in two
papers that are available on request from Annette Fitzgibbon (Senior Executive Officer)
[Annette.Fitzgibbon@hse.ie].
A sample of 11 datasets relating to disability was identified by WG5 and information was
obtained on each one by a named informant using a standard pro forma; allied with
interviews as needed. These were intended to reflect the various types of datasets that are
currently in use: from those centred around individual service users to those focussed more
on service delivery, as well as ones that contain information on small groups of persons to
those that have national coverage such as the National Intellectual Disability Database and
the National Physical and Sensory Disability Database. Moreover some databases are
based on locally devised Excel spreadsheets whereas others were commissioned from
software specialists who provide ongoing technical support to users.
The strengths and limitations of the databases are noted in the following Figures.
1
This is an interim title and was chosen to distinguish the proposed new information system from existing databases.
However the term Register is in line with the terminology widely used by health services for discrete populations.
2
HSE & DoH (2104) Value for money and policy review of disability services in Ireland: Steering Group Project Initiation
Document.
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Do you agree with this summary? Are there other strengths not noted here?
Do you agree with this summary? Are there other weaknesses not noted here?
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Charting the way ahead
The new vision for disability services approved by the Government means that a new
Information System is required that builds on existing databases but overcomes their
limitations. The Figure summarises the main phases envisaged in the development of a
new information system – the Register - for disability services. We would like your
comments on each of the five stages.
1. Statement of purpose
2. Information required on people with disabilities and
service providers
3. Principles underpinning the information System
4. Proposed structure for the Information System
5. Devising a specification for the Information System
Figure: Stages in developing a new information system for disability services
Stage 1: Statement of Purpose
The main purposes of the proposed Register are summarised below.
In addition, the benefits of having the Register will need to clearly stated and advocated for.
Are there any other main purposes that need to be considered beyond those noted? Are there other
benefits to having a new Information System?
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Stage 2: Information requirements
The value of any information system lies in the reports that can be obtained from the
information gathered. Currently information is gathered on people with disabilities and also
on services provided to persons. This duality needs to continue.
Information on people with disabilities and services/supports received
The Figure below proposes the core information that is needed on individuals
receiving/needing specialist disability services based on the foregoing statement of purpose
and the proposals put forward in the Value for Money review. Demographic information will
also be continued to be gathered.
Needs, barriers
and aspirations
Supports/
services
Outcomes
Costs
Figure: Core information to be gathered on
people with disabilities
Needs, barriers and aspirations: A
common assessment framework has been
proposed by the NDA for assessing the needs
of adult persons with disabilities. The needs
of family carers also need to be documented.
Account also needs to be taken of the barriers
that people and families experience. Also
risks to ongoing family support through
parental ill-health for example.
The person’s and family’s aspirations –
obtained through person-centred planning for
the immediate and longer term – need to be
recorded as these determine their personal
outcomes.
Supports and services: This domain covers
the supports which the person receives
including those provided by/to family carers and by mainstream services. The specialist
services that the person currently receives will be described along with the number of
support hours. In addition, details of new/improved services urgently required by the
person can be recorded (e.g. within 12 months). The need for possible future services (e.g.
beyond 12 months time) might also be noted.
Costs: The costs of current services would be recorded for the individual. This would be
calculated by service providers perhaps initially as an average costing if the person uses
group-based services but ultimately the aim would be to arrive at individualised support
costs.
Outcomes: This could be done in terms of outcomes that hold for most persons with
disabilities (e.g. quality of life indicators) as well as those that are particular to the individual.
The review of outcomes would feed into a further assessment of needs, barriers and
aspirations so that a cyclical process is maintained.
(Note: Identifier and demographic information on each person would also be gathered).
Do you agree with these four domains? Are there other domains that should be included? What
essential information should be included about people with disabilities?
Examples of reports from the Register of individuals with disabilities would include:
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
A report can be generated for each individual that records the information held on the
Register under each domain.

Each service unit/provider can readily report on the demographics and support needs of
their clients.

For each Community Health Organisation area, the numbers of persons receiving
different services can be identified along with the costs of each. Comparisons can be
made across these areas.

The number of persons requiring new or improved services can be identified by
services, CHOs and nationally along with the likely additional costs of providing these
services.

Nationally the outcomes from using disability services can be identified and linked to the
costs of providing the services.
Are there other reports that are essential for service management and planning?
Information required on service providers
The Register would also hold details of service
providers. The two registers would be interlinked through use of health Identifiers. The
service register could contain information for
larger service providers as a whole but also in
terms of the ‘units of service’ they provide such
as the individual group homes, or personalised
support to an individual. Four domains of
information could be included in this register as
shown in the Figure.
Compliance
KPIs
Staffing
Budgets
Governance/Compliance: A register of
services would enable services to provide data
on their compliance with HIQA standards
Figure: Core information to be gathered on
which at present seems to be a recurrent
service providers
failing in inspection reports. Similar standards
could also be applied to non-registered services within key areas such as individualised
supports and care. Governance information, accreditation and quality systems used can
also be collated here.
Staffing: Details of the staffing establishment – numbers, grade, qualifications and type of
staff – as well as vacancies and turn-over in each calendar year could be recorded.
Budgets: Information on pay and non-pay budgets for the current financial year could be
noted for the service/service unit.
Key Performance Indicators (KPIs): Data on requested KPIs could be collated in this
section. This data would also draw on information recorded for individual clients: for
example in determining the number of people with ID and/or Autism in receipt of respite
services.
Do you agree with these four domains? Are there other domains that should be included? What
essential information should be included about services and supports?
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Examples of reports from the service register would include:

A profile could be derived for each publically funded service both in total or for each
individual service unit.

For each Community Health Organisation, the pay and non-pay budgets can be
ascertained for all disability services. This information could also be accumulated
nationally and variations across CHOs identified.

Changes in the number and type of staff within disability services can be monitored over
time by CHOs and nationally.

Information relating to specific Key Performance Indicators can be compared across
service providers and Community Health Organisations.
Note: The examples of the types of reports to be provided by the Information System are
only illustrative. Further consultations and debate will help to identify the priority reports to
emerge from the system.
Are there other reports on services that are essential for service management and planning?
Stage 3: Proposed Principles
Translating information requirements into reality requires certain decisions to be made with
respect to the overall design of an information system; referred to here as the principles
underpinning the Register. The main ones are summarised below.
Do you agree with principles listed? Are there other principles that should be noted?
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Stage 4: Possible Structure of the Register
Three levels of information gathering are proposed in each register. Access to different
levels of information can be controlled through access rights.
Level 3
Level 2
Level 1
Figure 4: Proposed Structure for the Register
Service User Register
Level 1: Details of individual service-users would be obtained by service staff on all
persons in receipt of a specialist disability service or who had been referred as potentially
being in need of a service. This is usual practice and such data is often part of a person’s
clinical record (which might be linked with the proposed Register). An individual health
identifier would be recorded in line with recent Act. This identifier will ensure that persons
receiving services from different providers can be identified: a scenario that may occur
more frequently in the future. The Health Identifier also makes it possible for individuals to
directly and securely access, check and correct their details on the Register.
Level 2: Information on service users would be collated at a service level to provide a
database of all users within that service. This is common practice across many disability
service providers and also in directly managed HSE services. These user records would
contain information on the services each person is currently receiving using the Service
Health Identifier proposed under recent legislation. Collating the data at this level ensures
that the Register is also of benefit to service providers and enables access to historical
records.
Included at this level is the Children’s data that will be held on the new Management and
Information system that is proposed for the Integrated Service Teams in the 25 Local areas.
(see later). For people who receive personal payments this level would not apply unless
they choose to contract with an existing service provider. Otherwise their information would
transfer directly from Level 1 to Level 3.
Level 3: The data required for the national Register will be transferred from the service
databases at Level 2. This is modelled on the arrangements that some providers have
instituted for transferring data to the National Intellectual Disability Database. The
anonymised information held on individuals can be analysed regionally (e.g. by CHO) and
nationally. It is envisaged that the required information at Level 3 will be transferred/
extracted from the data held at Level 2. As personalised budgets become more common,
information will come more from Level 1.
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Modules
The Service User Register will also provide the information that is currently collected by the
HSE separately under what is termed here as ‘modules’. Information from the Register can
be imported into the three existing databases shown in the Figure (provided the necessary
fields are included when entering information on users at Level 1).
This means that service providers would not need to make a separate return in either
spreadsheet or paper forms as is the case at present. As the Register becomes
established these separate databases would no longer be required.
Do you agree with the Structure proposed for the Service User Register? What modifications should
be made to it?
Service Provider Register
Information relating to service providers would be entered into a separate register. Again
this information could be gathered at one of three levels.
Level 1: This register would allow for individual service units to be identified within the one
provider agency; for example, different residential facilities as registered with HIQA. The
amount of detail collected on each unit would be determined by the requirements of the
National Register (see above).
Level 2: Information on individual service units would be collated for the broader provider
agency; for instance those holding a service level agreement with the HSE. This level would
also record information common across the service units. Service providers could extract
the required information from their current finance and HR systems and transfer it
electronically rather than having to separately complete Excel templates as is the case at
present.
Level 3: The data required for the national Register would be transferred from the service
provider database. These records will enable a national description to be made of the
specialist services currently being contracted and provided including their costs. This
information could also be used to build an information resource for service users or their
advocates as to the range of services that are available in their locality.
Note: The two registers will also interlink at Levels 1 and 2 as described above although
these links are not shown in the diagram.
Modules
The Service Provider Database should also be able to provide information for the two
systems currently used by HSE to obtain details of service delivery. This would cover HSE
directly managed services as well as contracted services.
Do you agree with the Structure proposed for the Service Provider Register? What modifications
should be made to it?
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Stage 5: Devising a Specification for the Register
The Figure summarises the decisions that are required in order to provide more detail about
the content of the two Registers and to guide their implementation.
Do you agree with the list of topics above? Are there other issues that need to be considered in
drawing up the specification of the proposed Register?
Risks to change
Some of the main risk factors to revising and developing new management and information
systems are noted in the Figure. Action plans for the implementation of the Registers need
to incorporate risk management strategies.
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Do you agree with the risks listed? Are there other risks that should be added?
Wider considerations
The development of information systems for disability services needs to set within a
broader context. Listed in the Figure are some of considerations identified in the
consultation workshop.
Do you agree with the wider considerations listed? Are there other considerations that should be
added?
Next Steps
1. The information requirements identified by the other Working Groups for the VFM
review will be sought.
2. A final report summarising proposals for the new Information system will be agreed
by WG5 by the end of October.
3. WG5 will submit their proposals to the Steering Group for the VFM review for
approval to proceed to the development phase (steps 3 to 7 below).
4. WG5 will enlist the help of HSE IT personnel to develop the business case for the
new system.
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5. WG5 will undertake further work on specifying the data fields to be included in the
new system.
6. A budget for designing, testing and implementing the new system will be identified.
7. An implementation team to oversee the development of the new system will be
appointed.
8. The new system would be piloted in selected areas and adjustments made to the
system.
9. The new system will be commissioned and rolled out in a phased basis.
Note: The earliest that the implementation of a new system is likely to begin is 2017,
assuming that the necessary human and financial resources are available throughout 2016
to support its development.
Have you any comments to make on the proposed next steps? Are there any further comments
you wish to make on the topics covered in this document?
Our sincere thanks for sharing your opinions with us. It is much appreciated.
Roy McConkey
On behalf of Working group 5 VFM Implementation Programme
24th September, 2015
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