Paper BSO 79/2015
To:
BSO Board
From:
Sandy Fitzpatrick
Subject:
Status:
BSO Engagement with the Administrative Data Research
Centre Northern Ireland (ADRC-NI)
For Approval
Date of Meeting:
25 June 2015
1.
Executive Summary
1.1.
The purpose of this paper is to seek approval from the Board for the Business
Services Organisation to signal its agreement in principle to make de-identified
Primary Care data, for which the BSO is the registered data controller, available
through the recently established and accredited Administrative Data Research Centre
for Northern Ireland (ADRC-NI) for approved research purposes.
1.2.
The ADRC-NI is a high profile initiative that has the backing of Government, the
support of the NI Executive and the endorsement of the Information Commissioner. It
is in keeping with the thrust of ‘Joined up Government’ and ‘Evidence based decision
making’, and offers considerable potential for an enhanced portfolio of policy relevant
research in the health arena, potentially utilising data from other relevant areas (e.g.
Education). The inferences that can be drawn from any research will also be more
robust as it will be based on all available relevant de-identified records rather than a
sample, as is currently the case with Northern Ireland Longitudinal Study (NILS).
1.3.
ADRC-NI has already attracted considerable inward investment to Northern Ireland
(£6.3M) through to 2018 and, if successful, further funding is likely to follow. There is
an opportunity for BSO to exploit this funding going forward through its involvement.
Importantly, any health orientated research that is undertaken using BSO deidentified data will essentially be free as the ADRC-NI will be covering the costs of
any researcher input as well as any costs that BSO incurs through its involvement.
1.4.
A number of high profile data custodians including Census, General Register Office
(GRO), Department of Agriculture and Rural Development (DARD), Department for
Employment and Learning (DEL), Land and Property Services (LPS) and Electoral
Office for Northern Ireland (EONI) have already committed to the process, with the
first project (i.e., a DEL project) due to go live in June. Discussions are also well
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advanced with Department of Education (DE) and Department for Social
Development (DSD) who are also expected to commit.
1.5.
It is likely that the ‘on-boarding’ of data custodians will gather momentum fairly rapidly
as the Statistics Co-ordinating Group of the NI Civil Service (comprising G5s/ G3s)
has now endorsed the initiative and NISRA’s involvement. The group plans to write to
the NI Civil Service Board to seek its endorsement for Departmental administrative
data to be released for ADRC-NI purposes.
1.6.
The legislative cover for the sharing of BSO data for health orientated research is
well established through our involvement with the NILS over the past decade. This
involvement has been extremely beneficial to both the BSO and the wider Health
family, as evidenced by the sample of NILS projects detailed in Annex A. The
ADRC-NI initiative will operate along similar lines to NILS but will work across
Government more widely. Once the research has been conducted the de-identified
data will be securely destroyed. At all times, BSO will remain the Data Controller for
BSO data – this will be explicit in all Data Sharing Agreements, which will be
developed on a project by project basis.
1.7.
BSO will be in control in terms of which research proposals it is prepared to release
its de-identified data for, as projects are approved on a project by project basis. The
research agenda could, if desired, be heavily influenced from within the Health family
who could, if desired, form part of the research team thus having a direct influence on
the research. This is the approach that both DEL and DARD have already taken.
1.8.
From an Information Assurance perspective, NISRA has a proven track record over
the past decade and has all the necessary arrangements in place to preserve the
confidentiality of all de-identified data. Their processes and secure environment have
been accredited to CESG (the information security arm of GCHQ) standards through
the use of an independent government approved security consultant. Importantly, at
no time will anyone involved in the ADRC-NI ever see the attribute data relating to
named individuals. NISRA has agreed to confirm this in writing and to confirm that
they cannot reverse the encryption process and that at no time would they ever seek
to do so. All research data are de-identified (i.e. names, addresses, dates of birth are
not included) and outputs checked for disclosure prior to release.
1.9.
Not engaging with the ADRC-NI could be difficult to justify and defend given the
precedent of BSO involvement with NILS and the Statistics Coordinating Group’s
endorsement of the initiative.
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1.10. BSO Chief Legal Advisor has reviewed the ADRC-NI proposal and the Statistics and
Registration Service Act 2007 (Disclosure of Patient Registration Information)
Regulations (Northern Ireland) 2015, which was passed in May 2015, and is content
that DHSSPS and its associated bodies (including the Business Services
Organisation – which is named in the regulation) can provide the relevant
demographic data they hold to the Statistics Board. This new legislation in
conjunction with existing legislation detailed at Annex E provides BSO with the legal
basis to engage with ADRC-NI for approved projects.
1.11. BSO currently provides the Honest Broker Service (HBS). This service enables
access to linked de-identified data in a secure safe haven for ethically approved
research projects. At a high level this is a similar concept to how ADRC-NI will deliver
access to linked de-identified data but with one fundamental difference. HBS was
setup specifically to enable access to linked de-identified health service data only.
The establishment of HBS for this purpose was the outworking of the Memorandum
of Understanding signed by all health service organisations. The ADRC-NI will not be
restricted to health service data only but will, for approved research, enable access
via a secure safe haven environment to linked de-identified administrative data
routinely collected by government departments, agencies and other statutory bodies.
2.
Recommendation
That the Board agrees in principle:
i.
to support the ADRC-NI initiative by signalling its agreement in
principle to share its de-identified data for research purposes;
ii.
for negotiations to commence on the level of funding that will be
provided to BSO for its involvement, which if insufficient will result in
the agreement in principle being withdrawn;
iii.
for the BSO data to be referenced in ADRC-NI data prospectus, in
the event that a satisfactory level of funding is agreed.
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3.
Introduction
3.1.
The purpose of this paper is to seek approval from the Board for the Business
Services Organisation (BSO) to signal its agreement in principle to make de-identified
Primary Care data for which the BSO is the data controller available through the
recently established and accredited Administrative Data Research Centre for
Northern Ireland (ADRC-NI) for research purposes. At the outset, the Board should
be aware that BSO will be able to decide, on a project by project basis, if they are
content to release their data. Indeed BSO could, if desired, form part of the research
team thus having a degree of influence on the research and any findings that
emerge.
3.2.
The BSO has historically made such data available for research purposes through its
involvement with the Northern Ireland Longitudinal Study (NILS), which has provided
secure research facilities within NISRA HQ for almost a decade. The sharing of BSO
data for research purposes with NISRA has been managed through a Service Level
Agreement funded by NISRA.
3.3.
Data are clearly the life blood of the ADRC-NI and the Board will appreciate the
considerable research potential that the BSO data affords, as evidenced by the
variety of NILS Projects (almost 100 in total). Accordingly, strong representation has
been made by both NISRA and the Director of the ADRC-NI (Dr Dermot O’Reilly,
QUB) to secure access to the BSO data, which is currently shared for NILS, for
ADRC-NI purposes. By way of example, Annex A details the more specialised and
policy orientated research that has been undertaken to date via NILS.
3.4.
Similar to NILS, funding to cover BSO’s engagement with the ADRC-NI will be
available and agreed through negotiations with the ADRC-NI team. In line with the
arrangements with other data custodians, the level of funding would be discussed in
the event that BSO gives its agreement in principle. The funding would cover our
involvement in providing our encrypted and de-identified data extracts on a project by
project basis, producing metadata and liaising with NISRAs RSU and researchers
during the research development phase.
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4.
Background to the ADRC-NI
4.1.
NISRA gave an ADRC-NI presentation to members of the Chief Executive and
Director of HR and Corporate Services in May 2014. This highlighted that the
Administrative Data Research Network (ADRN) is a Government backed initiative
which has secured some £35M of ESRC funding across the UK over the five year
period ending 2018. It has given rise to the establishment of a dedicated
Administrative Data Research Centre in each of the four countries of the UK. QUB,
Ulster University and NISRA were awarded the contract to jointly manage the
Northern Ireland Administrative Data Research Centre (ADRC-NI), with Dr Dermot
O'Reilly (QUB) appointed as director.
4.2.
£6.3M of ESRC funding (plus a further £750K from the Public Health Agency
Research and Development team to build research capacity) was secured for the
Northern Ireland initiative over the same period. NISRA has advised that the Minister
for Health, in his previous role as Finance Minister, took a proactive stance in
promoting the ADRC-NI among his Executive colleagues and, indeed, participated in
the ADRC-NI launch event in December 2014, along with Minister Farry.
4.3.
The key thrust of the ADRC-NI initiative is to provide a mechanism for undertaking
targeted, and policy relevant, research by facilitating the use, and linkage of, the
administrative data routinely collected by government departments, agencies and
other statutory bodies. By doing so, the aim is that this will help ensure that the day to
day decisions taken, which affect the lives of ordinary people, are firmly anchored on
a solid evidence base.
NISRA’s specific involvement in the ADRC-NI initiative includes the data acquisition
4.4.
through NI departments, agencies and other statutory bodies. In addition, under the
management of the Registrar General for Northern Ireland, NISRA has direct
responsibility for:
i.
the provision of the necessary secure infra-structure and secure environment
that is utilised to undertake the required data linkage work and facilitate the
research;
ii.
granting access to the secure environment. This requires researchers to have
(a) the appropriate security clearance, (b) undertaken the mandatory Safe
Research Training and (c) been granted Approved Researcher status.
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5.
Shared vision of ADRC-NI and NILS
5.1.
The BSO has been providing administrative data to the Northern Ireland Longitudinal
Study (NILS) since 2006. Specifically, this has included the provision of information
from the system that BSO use to manage the registration of patients with a GP
practice for the purposes of Data Linkage Projects (DLPs), 13 of which have been
approved over the past 10 years (see Annex A for further details). Because of its
utility for research purposes, the information provided for NILS is now being sought
for the ADRC-NI. Other key data suppliers to the NILS include Census Office,
General Register Office (vital events) and Land and Property Services, all of whom
have signalled their agreement in principle to permit their de-identified data for
ADRC-NI research purposes.
5.2.
Funding of circa £180K has been provided to BSO over the past 5 years in order to
support the NILS work (e.g. providing de-identified data extracts, production and
maintenance of metadata, meeting with researchers to assist in the development of
research proposals and facilitating the secure encrypted linkage process for DLPs).
In addition, the availability of this funding, and the safe research undertaken on the
data, has helped to secure real tangible benefits in terms of our internal data
infrastructure, analytical capability and overall quality of our data. In a similar vein,
additional funding will be available for the BSO to support the ADRC-NI.
5.3.
All ADRC-NI research proposals must be approved by a UK-wide approvals panel
and must receive ethical approval. The approvals panel requires an assessment from
NISRA’s Research Support Unit (RSU) (on behalf of the ADRC-NI leadership team)
in terms of the feasibility of the project and any Privacy Impact considerations. Once
a project has been approved, NISRA will engage directly with data custodians, who
encrypt their data as part of the data linkage process, in order to generate the deidentified data sets that will be merged for research purposes. Importantly, these
responsibilities (i.e. by NISRA’s Trusted Third Party (TTP) who have more than a
decade’s experience in this important area) are completely separated from those of
NISRA’s RSU, who manage the secure setting and sign-off any outputs as safe to
release from a disclosure control perspective. Further detail on the ADRC-NI
methodology of linkage is in Annexes B and C.
5.4.
The key differences between the NILS and the ADRC-NI are that:
i.
NILS covers approximately 28 per cent of the population whereas the
aim of the ADRC-NI is that all records would be available (on a deidentified basis) for research purposes; and
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ii.
While NILS data are warehoused, ADRC-NI data are not (i.e. data
are generated by data custodians on a project by project basis and
securely destroyed when the research has been conducted). In
addition, the separation of duties between NISRA’s TTP and the
RSU ensures that no one person will ever see the attribute data
relating to named individuals.
6.
ADRC-NI governance
6.1.
From an operational perspective, the ADRC–NI has been built on the NILS
processes which have been up and running for some 10 years and have been
accredited to CESG standards. In addition to internal NISRA project management
arrangements, the day-to-day work of the ADRC-NI is managed and monitored
through the NI Operations Group. This comprises Principal/Senior Principal
representatives from NISRA and senior representatives from both Queens and Ulster
University. The Data Acquisition work is managed and monitored through an
Administrative Data Forum, chaired by Dr Tracy Power (G5 NISRA), which includes
NISRA statisticians from all government departments and representatives from other
data custodians such as EONI. Both of these groups report directly to the Steering
Committee (Annex D). The Steering Committee typically meets on a quarterly basis,
and reports to the ADRN’s Management Board, which meets on a quarterly basis.
7.
ADRC-NI data acquisition
7.1.
A number of key data custodians have already signalled their agreement in principle
to share their de-identified data with the ADRC-NI for research purposes. These
include Census (100% of data from the 2001 and 2011 Censuses), GRO (in respect
of Vital Events), DARD (in respect of the Farm Census), DEL (in respect of Students
in Higher Education), EONI (in respect of the Electoral Register) and LPS (in respect
of Valuation Lists). In addition to discussions with BSO, negotiations have been
ongoing with the Department for Social Development and the Department of
Education and NISRA has advised that, given developments, they are anticipating a
favourable response. Those parties who have already signalled their agreement in
principle have been taken through NISRA’s secure infra-structure and secure
environment that is utilised to undertake the required data linkage work and facilitate
the research and, like BSO in respect of NILS and DLPs, are satisfied that their
information is safe in NISRA’s hands.
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7.2.
At a meeting of the Statistics Co-ordinating Group (SCG) on 21 May there was strong
support for the ADRC-NI from SCG members, who felt that high level endorsement
from the NICS Board would assist with the data acquisition process by encouraging
departmental participation at the highest level. The SCG has undertaken to write to
the NICS Board to (a) highlight the benefits of the ADRC-NI initiative, (b) outline the
type of innovative research that it supports and (c) seek the Board’s endorsement for
Departmental administrative data to be released for ADRC-NI purposes.
8.
Current position
8.1.
NISRA’s secure environment, which has been utilised for NILS research over the
past decade, has been fully accredited through the involvement of an independent
government approved security consultant. In addition, it has been subject to an IT
Health Check to CESG approved standards, which incorporated penetration testing.
This ‘tried & tested’ accredited secure environment will be used for all ADRC-NI
based research.
8.2.
The first project, using data from DEL (HESA) and Census, examines factors
associated with decreased representation in higher education will commence in June
and afforded the opportunity to pilot NISRA’s encrypted linkage methodology, which
was successfully implemented. Further details on (a) the encrypted linkage
methodology that NISRA deploys, (b) procedures within the secure environment and
(c) the obligations that researchers must fulfil are included in Annex B.
8.3.
To date, four research proposals have already been approved by the ADRN
approvals panel. One of these involves examining migrants in Northern Ireland and
their needs for and use of mental health and social care. The project requires data
from the BSO relating to healthcare registration, service utilisation and mental health.
It is understood that there are a number of other projects in the pipeline that would
require access to the type of BSO data typically shared for NILS.
9.
Legislative cover for the sharing of the data sought by ADRC-NI
9.1.
BSO has a Service Level Agreement (SLA) in place with NISRA which covers the
sharing of personal identifiable data on approximately 28% of the population for the
creation of the NILS data. From this, NISRA produces the NILS extract, removing all
personal identifiers before making the data available for research purposes within its
secure environment. At all times, researchers are supervised while using the secure
environment.
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9.2.
The legislation that provides the cover for BSO’s involvement with the ADRC-NI
mirrors that which provides cover for BSOs involvement with the NILS, as the data
sharing processes are essentially the same. In summary, this includes the following,
which are detailed in the SLA.
 Census Act 1969
 Statistics and Registration Services Act 2007
 Births and Deaths Registration (Northern Ireland) Order 1976
 Health and Personal Social Services Act (Northern Ireland) 2001
 Notification of Births Act 1907
 Health and Personal Social Services (Northern Ireland) Order 1972
 Data Protection Act
9.3.
In addition, under the terms of the Statistics and Registration Service Act 2007
(Disclosure of Patient Registration Information) Regulations (Northern Ireland)
2015 DHSSPS and its associated bodies (including the Business Services
Organisation – which is named in the regulation) can provide the relevant
demographic data they hold to the Statistics Board. Under this regulation, the data
being shared are simple demographic data. They include patient reference number,
name, address, date of birth, gender, country of last residence and date the patient
last received health & social care.
9.4.
The data sharing regulation supports the Registrar General for NI, who is the Chief
Executive of the Northern Ireland Statistics and Research Agency, in his statutory
duty to produce population statistics under section 5 of the 1969 Census Act. It also
supports the Registrar General in his functions in relation to the decennial Census of
Population and Housing.
9.5.
Under the terms of section 5 of the 1969 Census Act the Registrar General shall
“publish statistical information concerning the population of Northern Ireland in the
interval between one census and another”. This allows the Registrar General to
support research projects which will produce statistical information on the population
of Northern Ireland. The ADRC-NI research projects, which would be undertaken with
the Registrar General’s authority, would use simple demographic data to link, for
example, patient registration datasets with the Census and derive resultant
aggregate statistics on the population.
9.6.
In preparation for the ADRC-NI becoming operational in autumn 2014, NISRA sought
advice from the Information Commissioner for Northern Ireland (Ken McDonald),
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who, in so far as he can provide advice, is content with the proposed processes.
NISRA has also obtained ethical approval for the process and the construction of the
data from the Office for Research Ethics (REC reference: 14/NI/0026 refers).
9.7.
Finally, NISRA sought advice from the Departmental Solicitor’s Office for the ADRCNI. The Departmental Solicitor’s Office is content with the processes.
Annex A: NILS BSO DLP projects
Completed and active projects
1. An exploratory analysis of child dental health and use of dental care services in Northern
Ireland
2. Lone mothers at time of birth: who are they? An exploration of their socioeconomic and
household characteristics.
3. NILS and health-service related data: a DLP linking breast screening data to NILS to analyse
variation in uptake
4. An exploratory analysis of adolescent dental health and use of dental care services in
Northern Ireland
5. Use of antibiotics by demographic and area characteristics: An exploratory analysis of the use
of antibiotics by demographic and area characteristics – an exemplar study using the
Northern Ireland Electronic Prescribing and Eligibility System (EPES).
6. A DLP using the NILS and BSO EPD: pharmaco-epidemiological study of Anxiolytic and
Antidepressant Drug use in Northern Ireland.
7. Prevalence and patterns of antidepressant use among women of reproductive age in
Northern Ireland.
8. Exploring the relationship between deprivation measured at individual, household and area
level and cancer incidence and survival in Northern Ireland: An exemplar linkage study using
the NILS and NICR databases.
9. The grief study: sociodemographic determinants of poor outcomes following death of a family
member.
10. Population characteristics of stigma, condition disclosure control and chronic health
conditions.
11. Job stress and mental health status: the relationship between the number of hours per week
spent working, current health status and accumulated prescriptions for symptoms of
depression or symptoms of heart disease.
12. The Health and Mental Health of Caregivers in Northern Ireland – A Study based on the
Northern Ireland Longitudinal Study (NILS)
13. Cultural norms of health-related behaviour – A Case Study of Protestant and Catholic
Communities in Northern Ireland
Proposed projects not yet started
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14. A Geographical Analysis of Risk Factors for Childhood Type 1 Diabetes in Northern Ireland
over Two Censuses
15. Social mobility and the emergence of new mixed-community identities: Mapping occurrence,
understanding causes, determining consequences
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Annex B: ADRC-NI methodology of linkage
Annex C outlines the linkage methodology employed by the ADRC-NI. This
approach ensures that staff members involved with the linkage process will never
have access to both demographic and attribute data.
NISRA’s Data Integration and Linkage (DIAL) team will be responsible for linking
data from separate government departments. This stage will require departments
sending personal data with a unique identifier to the DIAL team
In order to maintain physical security of the demographic data, it will be linked in a
secure room within McAuley House (NISRA). Within the linkage room a clear desk
policy is implemented, sensitive paper based information is shredded, and laptops
and IronKeys are locked away at night. All staff will complete on an annual basis
‘Protecting Information Training to ensure that they are aware of their responsibility
when accessing shared data.
In consideration of technical security, data will be transported from the departments
via IronKey or an Eclypt Drive; data linkage will take place on a secure network
managed by the DIAL team (configured to hold CONFIDENTIAL data); and
completion of an additional IT Health Check review. The DIAL team will delete all
data relating to the linkage from their network following transfer to linked Ids to the
Research Support Unit.
Researcher Support and Research Facilities
Access to the de-identified linked dataset will be available only in the secure
research setting in McAuley House, NISRA. Research in the secure setting will take
place on a secure network, separate to the DIAL team network, and researchers will
have access only to their project specific datasets via password controlled user
accounts.
Before accessing the linked dataset in the secure setting, the researcher must firstly
apply to use the data for research. The proposed research is required to meet a
number of criteria before access to the de-identified dataset is provided. Ethical
approval will also be required for ADRC-NI projects.
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The Research Support Unit, in conjunction with data provider’s knowledge of
sensitive variable, will assess the disclosure risk of the de-identified linked dataset
and if necessary modify the dataset e.g. adjustment by collapsing variables, or
providing only a sample for the data to researchers.
Researchers will be required to undertake ‘safe-researcher’ training, sign licence
agreements, and understand the ADRC-NI security and disclosure policies before
accessing the linked dataset in the secure setting. After access is given to the project
specific de-identified linked data in the secure setting, the researcher will be
supervised at all times to ensure potentially sensitive information is not recorded.
Furthermore all research outputs will be checked for disclosure (outputs must have a
minimum cell count of 10) before leaving the secure setting, and only released to
researchers via an institutional email address.
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Annex C: Data linkage – an example of de – identifying records
through the use of NISRA’S Trusted Third Party (TTP)
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Annex D: Membership ADRC-NI Steering Committee
Dr Norman Caven
NISRA Chief Executive
Dr Dermot O’Reilly
Director of the ADRC-NI
Dr Ken Macdonald
ICO
Vacant post
Director HSC R&D
Prof Hugh McKenna
Pro Vice-Chancellors from UU
Prof Tony Gallagher
Pro Vice-Chancellors from QUB
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Annex E – Legislation Governing the Transfer of Data between BSO and NISRA
Northern Ireland Longitudinal Study (NILS) Legislation
The Transfer of data between the BSO and NISRA is governed by statute, under
which the organisations individually operate. The transfer of data is catered for
under:
•
Notification of Births Act 1907 (section 1);
•
Health and Personal Social Services (Northern Ireland) Order 1972 (section
43).
The Department of Health, Social Services and Public Safety (DHSSPS) and BSO
have the legal power to share data with the Registrar General under The Notification
of Births Act 1907 and Health and Personal Social Services (Northern Ireland) Order
1972 (section 43). The Notification of Births Act 1907 allows Medical Officers or
DHSSPS to provide information to the Registrar General (RG) on all babies born in
NI and the Health and Personal Social Services (Northern Ireland) Order 1972
(section 43) facilitates the assistance of health research. These are the legal
gateways which are employed to process the NILS.
•
The Census Act (Northern Ireland) 1969 as amended by The Law Reform
(Miscellaneous Provisions) (Northern Ireland) Order 2005 (section 22).
Under Section 5 of the Census Act (Northern Ireland) (1969) NISRA has the power
to further process the data for the purposes of commenting on the condition of the
population – see Annex B. This is a long-standing position and was taken forward
after consultation with the then Information Commissioner for Northern Ireland (Ms
Marie Anderson) when the 1969 Census Act was amended in 2004.
The Registrar General (RG) can gather information from other organisations
‘concerning the population of Northern Ireland’ ‘between one census and another’.
The RG can give data to DHSSPS under The Births and Deaths Registration
(Northern Ireland) Order 1976 and The Health and Personal Social Services Act
(Northern Ireland) 2001 (section 51).

All data transfers are subject to the Data Protection Act (1998), the Human
Rights Act (1998) and Statistics and Registration Service Act 2007
Section 33 of the Data Protection Act permits the processing of personal data for
research purposes. The ICO’s Anonymisation Code of Practice highlights conditions
that must be satisfied when processing personal data for research which will also be
followed by NISRA.
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