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How To Get There From Here(2008) 5:2 SCRIPT-ed 294 (2008)
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How To Get There From Here: Reuse Of Administrative Records In The Netherlands And The UK
Catherine
Heeney*
Table of Contents:
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Cite as: C Heeney, "How to get there from here: reuse of administrative
records in the Netherlands and the UK", (2008) 5:2 SCRIPTed
294 @:
http://www.law.ed.ac.uk/ahrc/script-ed/vol5-2/heeney.asp
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DOI: 10.2966/scrip.050208.294 |
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© Catherine Heeney 2008.
This work is licensed under a
Creative Commons Licence.
Please click on the link to read the terms and conditions.
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1. Introduction
This paper will
consider the spurs and barriers for access and reuse of public sector
administrative records by National Statistical Institutes (NSIs).
NSIs are the principal public sector organisation involved in
collecting, compiling and disseminating official statistics1
within a nation state. The Dutch NSI, the Centraal Bureau voor De
Statistiek (CBS) and the UK’s NSI, the Office for National
Statistics (ONS)2
and their access and reuse of administrative data will be considered.
CBS has enjoyed both access and reuse of public sector administrative
data for several decades for the purposes of statistical research.
ONS has for some time been seeking to establish comparable access to
and reuse of administrative records collected by government bodies.3
However, in the UK an ambiguous legal framework and a
non-standardised system of records management have presented major
barriers to the realisation of this ambition. The Netherlands has
well established legal and technical systems to support record reuse.
This has created a framework that has been of great importance in
enabling CBS to make use of administrative records. However, it will
be argued that acknowledgement of the social and ethical dimensions
of this process have been vital to sustainable access and reuse of
administrative data in the Netherlands. To illustrate the dangers of
neglecting these dimensions, the paper will refer to the example of
an unsuccessful attempt to establish long term data-linking in an
administrative department of the Canadian government.
In the UK, the
Statistics and Registration Service Act 2007, which came into effect
in spring 2008, is among changes which aim at improving the
exploitation of administrative records. The Act potentially heralds
a new era of availability of administrative records for the
production of statistics. It also provides an opportunity to
consider some of the challenges to the reuse of administrative data
and how far the new legislation can address them. Alongside legal
developments, programmes such as the National Programme for I.T
(NPfIT) aim to address the traditional lack of standardisation in NHS
records systems. The argument presented here is that while
legislation and standardisation are important facilitators of the
reuse of administrative records, the ethical and social impact of
these measures must be addressed. Widespread social acceptance is a
vital element of sustainable use of administrative records. The
paper will discuss primarily how lessons can be learnt from the
approach taken by the Netherlands with regard to the access, use and
subsequent dissemination of statistical products to the wider
research community. The following factors will be discussed in
relation establishing sustainable access by public researchers to
administrative data held by public bodies: clarity and transparency
in regard to the types and purposes of access, and strict
delimitation of subsequent use and dissemination of statistical
products. It will be argued that these factors are important in
ensuring the trust and support of the public and of the departments
supplying the data, and that maintaining this support must be taken
as seriously as the technical or practical, and legal aspects of data
management.
There
is increasing endorsement across the research community for access
and reuse of records which have already been collected by the public
sector.4
As data is seen increasingly as a resource to be used beyond its
original purposes, the paper also aims to address generic issues
arising from the reuse of data outside of the context in which it was
collected. The article will deal with the benefits both of access
and reuse of data. Access here refers to the availability of data to
a particular organisation. Reuse, in this context, means that the
data is available for a purpose other than that for which it was
collected and/or by parties other than the original collectors. In
the case under discussion here, reuse of administrative records
entails that administrative data collected by an administrative
department is available for use by NSIs for statistical activities.
The desirability of such an approach has been seen as advantageous
for a considerable time. In 1979 a United Nations report on the
subject stated, that “Administrative data may be an inexpensive
source of data for the statistician, because they arise as a
by-product of ongoing activities paid for out of other budgets.”5
The CBS in the Netherlands has access to administrative records for
statistical research and this is advantageous for a variety of
reasons. For example, one of the main reasons cited is that reuse of
administrative data is cost-effective. The UK Census is a costly
exercise. It requires an army of people to deliver forms to every
household, follow up exercises to capture slow responders and a
substantial advertising budget.6
2. Official Statistics
in the UK
In the UK, the Census
remains the most important source of statistical data on the whole
population. The possibility of extending the use of administrative
records by ONS has been under discussion for some time. If this were
achieved it could reduce the number of costly surveys and augment or
replace data collected in the Census.7
Quite apart from the cost of carrying out a census, there are a
number of problems concerning the Census data itself. The Census,
while it constitutes the main source of statistical data on the whole
UK population, is only taken every ten years. This means that the
data will be relatively out of date for some periods of time.8
Data from administrative sources is likely to be up to date and could
potentially avoid the problem of non-response among target
populations. Despite its being a legal requirement to respond to the
Census significant numbers of people still fail to participate.
There was said to be undercount of one million people on the 2001
Census.9
ONS and its predecessor organisations have traditionally had only
limited and restricted use of administrative records.10
For example, administrative data has been made available to ONS and
its predecessors under the Population Statistics Act 1938. This
required administrative data on life events to be provided to the
Registrars General for statistical purposes. Administrative sources
are also used for research in isolated and strictly limited cases
such as the Longitudinal Survey, which links data from the records of
some individuals to Census data.11
The Census Act 1920 grants permission for a census to be carried out
and was amended in 1991 by the Census Confidentiality Act but this
legislation does not deal with access and reuse of administrative
data.
The Office for National
Statistics (ONS) in the UK was established in 1996 as an executive
agency. It was a department of the Chancellor of the Exchequer. The
Statistics and Registration Service Act 2007 transfers the “property,
rights and liabilities” of ONS to the Statistics Board. 12
The Statistics Board is a department of the Cabinet Office. 13
The production of official statistics in the UK is decentralised.
Statisticians who work on official statistics across government
departments and in the devolved administrations of Wales, Scotland
and Northern Ireland are part of an umbrella organisation, the
Government Statistical Service (GSS). Statisticians working for the
GSS produce National Statistics (NS). The Statistics Commission,
which had responsibilities under the Code of Practice, was a
non-statutory advisory body with responsibility for priority setting,
the integrity of National Statistics and quality assurance.14
This body will cease to exist when the SRSA comes into force in 2008.
15
The duties of this body will be subsumed by the Statistics Board.
In the absence of
specific statistical legislation in the UK, the National Statistics
Code of Practice and associated protocols were originally intended as
an ethical and procedural guide for government statisticians.
A National Statistics Code of Practice was produced in 2002 along
with eight Principles and twelve Supporting Protocols in 2004.
16
The NS Code of Practice was intended to facilitate access to
administrative records. This is evident from the description given of
the roles of departmental ministers, which is to “authorise
access to all data within their control for statistical purposes
across government, subject to confidentiality considerations and
statutory requirements.”17
However, the existence of National Statistics did not in itself solve
the problem for ONS of access to administrative data held by other
departments. Government departments must act within the law and
there had previously been no well defined legal “gateway”
for administrative records held by government departments to be
accessed by ONS for the production of statistics. 18
3. The production of
official statistics in the Netherlands
The system of official
statistics in the Netherlands is centralised, with the CBS producing
the majority of government statistics. The CBS, as of 2004, is an
autonomous agency but the Minister for Economic Affairs remains
politically responsible for legislation and the budget.19
The Social Fiscal Number, now the Burgerservicenummer (BSN) is a
unique national identifier allocated to Dutch citizens at birth and
used consistently in public sector records. The population register
contains the BSN, which is extensively used in government
administrative records. A unique national identifier is a number or
code assigned to each individual and where this is used consistently
in most records, as is the case in the Netherlands, it greatly
facilitates the linkage of records held on individuals by different
government departments or organisations. A population register is an
index or list which contains a unique identifier and other
information about an individual. This allows a record to be matched
to an individual’s unique number and verified. Used in
conjunction the identifying number and the population register
provide invaluable tools for successfully matching records on a given
individual. This system facilitates the creation of a flexible
dataset. Flexibility is necessary if administrative records are to
provide data on the range of variables available from censuses and
surveys.
The coverage achieved
by the population register is said to be good due to its central role
in the Dutch public sector. As Van der Laan points out “It is
extremely difficult to function in Dutch society without being
included in the population administration.”20
There is no Census in the Netherlands. Instead the creation of
Census type data involves linking micro-data from administrative
sources with household sample surveys, which are conducted by the
CBS. The prevailing view at CBS is that a Dutch Census “[I]s
too costly and uncertain to serve as an adequate source for
policy-oriented purposes and, therefore it has become obsolete as a
meaningful statistical data source.”21
Administrative records are seen as the primary source of information
on the population.22
The continued functioning of the current system in the Netherlands
depends upon government departments being both able and willing to
supply administrative records to CBS. This cooperation, moreover,
rests upon these departments being reassured that the data they
supply is being correctly managed and protected.23
The Sociaal Statistisch Bestand (SSB) is a database designed to
manage the linking of administrative data for statistical purposes.24
The use of the SSB requires that identifiers are used for matching
purposes. The security measures for SSB involve storing identifying
data separately from data files, while the access to linked records
is strictly controlled.
The Dutch Personal Data
Protection Act, Wet bescherming persoonsgegevens (WBP), came into
force in 2000 following EU Directive 95/46/EC. Article 9 of the WBP
grants exemptions from the requirement to notify the Data Protection
authority of data processing done for statistical purposes. Article
29 and 44 of the Act exempts the processor of statistical data from
granting rights which would be accorded to data subjects in the case
of “personal data.” These include entitlement to informed
consent and verification of the data. This exemption rests upon the
condition that “the necessary arrangements have been made to
ensure that the personal data can only be used for statistical or
scientific purposes.”25
The production of official statistics was, regulated
specifically by the Official Statistics Act 1996, which has now been
superseded by the Statistics Netherlands Act 2003. The Statistics
Netherlands Act establishes a legal basis for the existence of CBS,
and the Central Commission of Statistics (CCS) which is a supervisory
body. Section 3 of this Act defines the duty of CBS as being “to
carry out statistical research for the government for practice,
policy and research purposes and to publish the statistics compiled
on the basis of such research.” Sections 33 and 34 of the Act
deal with access to administrative records for statistical purposes.
Section 33 enables the use of registers from a wide variety of public
sector institutions and departments (including central government,
utility providers and local authorities) for statistical purposes.
Section 34, permits the use of the BSN (formerly the Social Fiscal
Number) for statistical purposes. The director general of CBS is
authorised to use the number in registers and communicate with
agencies using this number for the purposes of compiling statistics.
4. Dissemination
As the dissemination of
data is perhaps the key role of NSIs it is useful to consider some
aspects of the approaches taken in the UK and the Netherlands,
particularly as they relate to the establishing and maintaining
trust. CBS allows comparatively restricted access to micro-data
(individual level data) for outside researchers. The Scientific
Statistical Agency or Wenshappelijle Statistisch Agentschapp
(WSA) is part of the Scientific Research Council of the Netherlands.
Its role is to act as a liaison between the scientific community and
CBS. It must balance the demands for greater access to micro-data
with the imperative to maintain public trust. Detailed tables and
micro-data are important products of CBS.26
CBS releases public use files but scientists who seek access to more
detailed micro-data must fulfil certain criteria. These include
affiliation to a university or an institution which is involved in
pure policy or related research.27
Researchers allowed access to this data are subject to a code of
conduct. In this, it is stipulated that data will only be used for
statistical purposes and results will be submitted to CBS for checks.
This system is known as Micro-data Under Contract (MUC). On-site
access is provided for data more disclosive data. Private companies
are not entitled to CBS micro-data. Dissemination of data is,
therefore, strictly controlled and organisations and purposes are
constrained. Joris Nobel of CBS noted, with regard to the adequacy
of these measures to fulfil the legal obligation to protect the
data-subjects, “Beyond that, it seems that the Registratiekamer
has no particular strong feelings about (our feelings about) our
relations with respondents.”28
Unlike in the
Netherlands, in the UK there is not a single authority that acts as a
liaison between the academic community and NS or ONS. There are
arrangements with several academic bodies for specific ONS data
products. A microdata release panel was instituted at ONS at the same
time as the Code of Practice to make decisions on the suitability of
microdata for release to third parties for research purposes. The
ESRC Data Archive and The Centre for Census and Survey Research,
based at the universities of Essex and Manchester respectively, also
hold data sets and deal with requests for access from the research
community. This means there has not been the same centralised
control over access to statistical products as there exists in the
Netherlands. This establishes a situation which is perhaps more open
in terms of making existing data available to a wider variety of
researchers including those working within the private sector. Some
argue that this benefit of National Statistical products are
maximised by extensive use. Such arguments may oppose a system which
aims to protect privacy and ensure trust by employing strict access
controls. The view held by some at CBS is that the fact that
official statistics depend upon access to administrative records
requires a rather stringent approach to both data release.29
The Statistics and Registration Services Act does not challenge the
existing ethos with regard to the more open dissemination of official
statistical products in the UK. In Section 8 of the Act the duties
of the new Statistics Board with respect to the monitoring of
“quality”, “good practice” and
“comprehensiveness” in the “production and
publication of official statistics” are established. Arguably
these duties are important as they maintain the reputation of
official statistics and those who produce them. However, some critics
of the Act claim that it does not go far enough generally to ensure
public trust.30
5. Access to administrative records
Trust and privacy have
long been recognised as important issues in relation to dissemination
of statistical data.31
They are equally crucial factors in sustaining the support of
relevant parties for access and reuse of administrative and they must
be acknowledged, as such, even efforts to overcome legal and
technical barriers are perhaps the focus of attention. In the
Netherlands, there has been a system of record storage and
management, and legislation supporting the reuse of administrative
data for official statistics in place for a number of decades.32
There is also specific legislation defining both the responsibilities
and rights of CBS with regard to access to and use and dissemination
of publicly held administrative records. The legal position on
matching data across departments is clear, thus removing a
significant barrier to the use of administrative records.33
This situation has enabled the use of a variety of public sector
records for statistical research. Until recently the UK had neither
the practical infrastructure nor enabling legislation to allow the
widespread reuse of administrative records.34
Where legislation does not give a clear position, access to the
identifying information needed to reuse data for statistical purposes
can be an uncomfortable issue for those involved.35
The important differences between the two countries in relation to
access and use of administrative records are not, however, limited to
information management practices and legislation.36
Moreover, changes in both areas may fail to produce the desired
results where key actors, such as, for example, those who collect and
manage data or those who provide it, withhold their support and
cooperation. 37
A lack of stakeholder
support for data sharing practices can entirely undermine
data-sharing exercises, such as access and reuse of administrative
records for secondary purposes. The antecedents and consequences of
this will be discussed in relation to the so termed Canada’s
‘Big Brother Database’. New practices of access and
reuse of public sector data in the UK must also address the
traditional lack of data-sharing of this sort. Due to there being
little precedent for data-sharing for research purposes and other
purposes in the UK there is likely to be a period of organisational
and professional readjustment. This will involve both acceptance of
and resistance to new standards and proposed practices by
professionals and organisations. Moreover, the implementation of new
policies is unlikely to be a straightforward process. New practices
will not simply replace old understandings, agreements and roles but
will need to acknowledge and even build on them. As Timmermans and
Berg claim “Standards will attempt to change and replace those
practices, but […] the same standards need, to a certain
degree, to incorporate and extend those routines.” 38
Current measures, such as the creation of a “data spine,”
39
which could play the role of a population register, are an example of
the will to emulate countries like the Netherlands. However, there
have been key actors in this area who have voiced doubts about the
extent to which the Statistics and Registration Service Act 2007 will
enable statisticians based in ‘policy departments’ to act
autonomously.40
The doubts centre on the failure of the Act to adequately address
institutional constraints, which the statisticians will meet in
practice.41
This problem arises due the decentralisation of the production of
official statistics in the UK, a situation which does not exist in
the Netherlands. The UK and the Netherlands will continue to provide
a valuable source of comparison as the new UK Statistics Act takes
effect.
5.1
Removing legal barriers to access and reuse in the UK
The Statistics and
Registration Service Act 2007, gives a legal position on many issues
which have long presented barriers to access for ONS and its
predecessors. It defines the role of the new Statistics Board as
being “to have the objective of promoting and safeguarding the
production and publication of official statistics that serve the
public good.”42
It deals, among other things, with definitions of “Official
Statistics” and of questions of access to statistics by
ministers. Section 39 deals with “confidentiality of personal
information” and Sections 42 to 50 address the sharing of
administrative data from public bodies with the Statistics Board. As
in data-protection legislation in EU and members states, the
Statistics and Registration Service Act emphasises disclosure control
as a key component of the protection of research subjects.43
Section 43 deals with information relating to NHS registration. It
permits the Secretary of State to disclose patient registration
information to the Statistics Board. This information includes,
address details, date of birth and the patient identification
number.44
The uses of these identifying data are limited to the “production
of population statistics.”45
Section 47 relates to the power to authorise disclosure to the Board.
The Minister for the Cabinet Office may make regulations allowing a
public authority to disclose information to the Board, where “the
disclosure would otherwise be prohibited by a rule of law” or
“the authority would not otherwise have the power to make the
disclosure.”46
A transition period from the National Statistics Code of Practice and
its Principles and Protocols to the Statistics and Registration
Services Act will begin with the Act’s entry into UK law. The
Statistics Board will draw up guidelines in the interim period.47
This legislation
presents an important landmark in relation to access to and use of
administrative records by the UK’s NSI. However, the
governance framework has not been the sole barrier to access and
reuse of administrative records. The UK system has traditionally been
one of isolated departmental records management systems. Personal
identifiers have not been used consistently across government and
public sector data sources and there is no population register. One
study carried out on behalf of ONS found there had been as many as
eighteen different formats for the NHS number.48
This presents obstacles to standardisation. There have been a number
of initiatives throughout government designed to facilitate the
linking up and reuse of data. For example, ONS has been at the
forefront of plans to create a system to enable the secondary use of
administrative records for statistical research.49
Within the NHS, the (NPfIT) aims to gain a more standardised records
management system. The aims of this programme are to improve service
delivery but could also support the use of health records for
research.50
Indeed, there is increasing recognition in a number of quarters that
there is enormous potential research value in the records already
collected and held by the NHS.51
UK Biobank will for example access and use NHS administrative records
for biomedical research.52
However, the structure of government systems for the collection and
storage of data in the UK do not support routine data linking.
Furthermore, existing practices are unlikely to simply be superseded
even if new technologies and new governance systems encourage sharing
of data.
6. The ethical dimensions of reuse of data
As argued above, aside
from the technical and legal aspects of access to and reuse of
administrative records, there are other important issues to be
considered. These fall under the heading of the social and the
ethical. They range from how the actors involved in the production of
data incorporate both technology and law into practice, to matters of
privacy and public good.53
In the sphere of statistics the claim is often made by policy makers
that the production of high quality statistics is a good thing
precisely because they give rise to knowledge which will ultimately
be beneficial, whether it be to people in nation states or more
broadly.54
The justification for the existence of National Statistical
Institutes (NSIs) often rests on the argument that they provide the
government with the knowledge to govern in a more enlightened and
informed way.55
These sorts of public good argument can also be made about the reuse
of administrative data: using this data could save public money by
providing the raw materials for statistical research. The counter
argument usually comes from the perspective of informational privacy
and individual rights to control information pertaining to them. It
has been claimed that the issues are the largely the same for
administrative data and for data originally collected for statistical
purposes.56
However, the concept of “contextual privacy”, introduced
by Nissenbaum, could undermine this claim.57
If context is a key factor in an individual’s decision to
provide information, and Nissenbaum makes a convincing argument for
this being the case, then the original context into which information
is provided is not the same in the two cases. In other words, if one
provides administrative data it is on the basis of accessing a
service with its accompanying incentives and expectations. These will
be quite different when one provides data for research or statistical
purposes.
Otherwise, privacy is
defined rather narrowly in the official governance framework for NSIs
where it is seen simply as avoidance of the disclosure of identified
information outside of the original collecting organisation. As
indicated above, the law governing data more generally has exemptions
for statistical and research data. Therefore, while the issue of
context is recognised as being important in the protection of privacy
for identifiable data or ‘personal data’58
it is not significant in the case of data which is to be used for
research purposes.59
The Statistics and Registration Services Act remains faithful to the
Data Protection Act defining “personal information” as
“information which relates to and identifies a particular
person (including a body corporate).” 60
In the area of statistical research protection of privacy tends to
involve some combination of confidentiality and anonymity of data on
the one hand, and informed consent on the other. However, arguably
linking and reusing data challenges this traditional schema. In order
to link records the possibility of tracing individuals to whom the
data belongs must exist and, therefore, the data must remain
identifiable in some manner. Where there is a population register
which contains an index number this can act as a pseudonym or a proxy
for identity. This is the system used by CBS when linking
administrative files for statistical purposes. At some level, the
links between the identity of data subjects and large amounts of data
must be retained. The case of the database created by Human
Resources Development Canada (HRDC), to be discussed below,
illustrates how that failure to acknowledge and deal with these
matters can cause concrete problems of purpose drift and lead to a
widespread perception that public trust and individual privacy has
been abused.
7. Lessons on trust and reuse of publicly held
data
The lack of complaints
from the Dutch public about the linking-up of administrative records
for statistical purposes may rest on ignorance of these practices.
However, more optimistically, it may be due to there being a
sufficient level of trust in the ability of CBS to respect privacy
while carrying out its activities. This is important as without some
level of support from the public and policy bodies, efforts to link
data may raise objections on privacy grounds and undermine the
exercise. A useful reminder of the importance of trust in achieving
public support comes from Canada. The case of the Human Resources
Development Canada (HRDC) Longitudinal Labour Force File provides an
example of failure in gauging support for data linking and reuse.
HRDC was not an NSI but rather a government department, which had
inherited both the remits and the data of other defunct government
departments including: Labour Canada, Health and Welfare Canada, and
the Employment Insurance Commission. From the records of these
defunct departments HRDC created a database entitled the Longitudinal
Labour Force File, which eventually contained around 2,000 pieces of
information on each individual citizen. When attention was drawn to
its existence by pressure groups and the media, the backlash was
considerable. The database was termed a “citizen profile”
by the Privacy Commissioner and became known as the “Big
Brother Database” in the press.61
The motivation for compiling this database was apparently neither
certain nor particularly malicious.
How the linked-up
records would be used and by whom, were questions that were not
apparently clearly addressed. This meant that the product of data
linking was vulnerable to “fishing expedition” searches
of the database62
that is to say there was no pre-specified rationale for access and
reuse of the data. Indeed, Soleve may have been describing exactly
this situation when he wrote the following words: “There is no
diabolical motive or secret plan for domination; rather, there is a
web of thoughtless decisions made by low-level bureaucrats,
standardisation, policies, rigid routines and a way of relating to
individuals and their information that often becomes indifferent to
their welfare.” 63
This situation was apparently one that the public, its
representatives and indeed the Privacy Commissioner would not
endorse. Clearly acknowledging the place of ethical as well as legal
aspects of data access and reuse, the Privacy Commissioner responded
in the following way to the HRDC’s defence that it had not
violated Canada’s Privacy Act,
One does not have to be a privacy expert to see that this
assertion rests on a restrictive and literal interpretation of the
fundamental rights that are at the heart of the Privacy Act. I
do not find it satisfactory that the federal government's largest
department defends the creation, maintenance and expansion of
dossiers on vast numbers of Canadians by saying that it meets minimum
legal provisions…Surely a higher duty than that is imposed.64
With respect to the
lessons to be learned about the maintenance of public trust the
Canadian case suggests that any matching or linking is done in as
targeted a manner as possible. So for example, files could be linked
together for the purpose of a particular piece of official
statistical research and the link broken again. Canada’s
Privacy Commissioner used the analogy of silos and warehouses; 65
the former is a model of keeping data sources separate and protects
privacy by default. “Not having a single client file is a good
thing – on the principle that the more separate the databases
the lower the risk of indiscriminate collection, unrelated uses and
improper disclosure of personal data.” 66
8. Conclusion
Much has been done
since the publication of the consultation paper Statistics: a
Matter of Trust 67
to standardise existing practices across the decentralised system of
official statistics in the UK. This has included the creation of
framework documents for ONS and NS as well as the NS code of practice
and the supporting protocols and now, most importantly, the
Statistics and Registration Services Act. However, how far the Act
directly addresses the ethical and social factors which have an
impact on public trust is debatable. The act gives the UK’s NSI
a firm legal footing to access and reuse data which has been
collected to fulfil administrative requirements. However, this may
not go far enough in acknowledging existing political relations,
especially for those producers of National Statistics based within
the ‘policy departments’68
producing the administrative data. As discussed above in relation to
HRDC, even legally permissible activity may not be accepted by the
general population. Moreover, achieving good practice and public
support is arguably as dependent on the will of those involved in the
production of official statistics as on the law itself. The
Statistics and Registration Services Act does not permit the use of
records for anything other than statistical or related purposes, it
and the activities of the new Statistics Board operate in the wider
context of the management and use of public records in the UK and the
increasing interest of sections of the research community in reuse of
administrative data. It is perhaps unfortunate, therefore that plans
for a system for record linkage in the UK have tried to meet the
goals of a wide variety of potential users. In a recent discussion
paper on plans to create a joined up data source for the production
of statistics ONS stated the following: “This
database would underpin all ONS population and social statistics,
resulting in significantly improved, more consistent statistics for
the government community, the Health Service, academia and the
private sector”.69
This may be interpreted by the public as a lack of clarity at
policy level on the rationale for data linking. Moreover,
anti-fraud and anti-terrorism measures following 11 September 2001,
plus periodic imperatives to share information to avoid harm to the
vulnerable in society following certain high profile cases70,
as well as the negligent loss of records and plans for I.D cards, may
create a generalised negative perception of public sector data
management from which the Statistics Board are unlikely to benefit.
The path of linking
records for reuse in statistical research is well worn in the
Netherlands, while this largely new territory for the UK. The new Act
is a step forward in that it changes the situation where government
departments may have been acting ultra vires by data-sharing.71
In addition, there are moves in the public sector to facilitate
record linkage and reuse, such as NPfIT. However, the challenges may
lay primarily with the social acceptance of a reuse of public
administrative records. The issue of data being collected in such a
way that makes it easy to reuse can only be partially solved by the
introduction of new technologies and a legal framework. As Susan
Leigh Star and James Griesemer point out, in order for an enterprise
to be successful, in this case data linking and reuse, a variety of
different groups must be willing to work together to share collective
goals.72
There are no clear provisions within the Act for stakeholder
involvement in decisions around access and reuse of administrative
data for statistical purposes. However, arguably, where the purposes
of reuse are clear fears about privacy could be allayed; a
well-defined approach may pre-empt the social and ethical objections
potentially raised by the loss of “contextual integrity”73
and ensure the support of the public and other stakeholders.
Moreover, the argument that official statistics have the potential to
do good for the wider community is likely to remain a powerful one
for which people are willing to take additional risks. A strictly
regulated, transparent and demarcated sphere for the linking and
reuse of data could bring about a situation in which statisticians
would have a good deal of freedom to access administrative records
for statistical purposes. The lack of direct consent from
data-subjects in the Netherlands for the supply of much of the data
available to CBS is balanced against a regulatory framework that is
both stringent and fairly transparent. As the Canadian case
illustrates sustainable access to administrative records requires the
support of interest groups, policy makers and the public. It is
difficult to claim that the Dutch public and other stakeholders fully
endorse all aspects of CBS’s activities in this area. Indeed
studies by CBS suggest that some citizens feel that data matching,
even for statistical purposes, signifies a lack of individual control
over how data is used74.
However, CBS has maintained at least the tacit support of the public
and of the different government departments which contribute data for
statistical purposes, for several decades.
*
Research Fellow, The Ethox Centre, Dept of Public Health and Primary
Care, University of Oxford.
1
Official statistics disseminated by the national statistical
institute if the system is centralised but may be released by other
departments if the system is decentralised. See Organisation for
Economic Cooperation and Development, Glossary of Statistical Terms,
Available at http://stats.oecd.org/glossary/detail.asp?ID=4350.
2
Soon to be the Statistics Board.
3
D Wroe, “Beyond 2001: Alternative to
the Census: Study for the Office for National Statistics”
(1998) Volume 1 Office for National
Statistics.
4
The Wellcome Trust, “Sharing Data from Large-scale Biological
Research Projects: A System of tripartite responsibility,”
Report of a meeting organized by the Wellcome
Trust held on 14-15 January 2003 at Fort
Lauderdale, USA.
5
United Nations,
“The Development of
Integrated Data Bases for Social, Economic and Demographic
Statistics” (1979)
United Nations,
New York.
6
Between 2000 and 2002, £150 million
was spent on the UK 2001 Census, See “Office
for National Statistics, Outsourcing the 2001 Census”
Report by the comptroller and auditor
general, (2002)
HC 1211 Session 2001-2002 18 October 2002,
National Audit Office.
7
D Wroe, 1998,
See note 3.
9
N Cohen, “Our Missing Million”
(2003) The Observer,
9 November 2003.
10
The Population Statistics Act 1938 requires administrative data on
life events to be provided to the Registrars General for statistical
purposes.
11
Data on vital events from administrative sources are matched to
census data for a subset of the population in England and Wales.
12
Statistics and Registration Service 2007
Section 1(1).
14
National Statistics, “Framework for
National Statistics”, First Edition
National Statistics, Section 4.1.7 (k)
(2000).
15
Part of its remit was to consider the appropriateness of specific
statistical legislation and to make recommendations on this issue.
17
National Statistics 2000, See
note 14.
18
P Jackson, “The Legal Framework for National Statistics in the
UK” 2003, Office for National
Statistics, Joint ECE/Eurostat work session
on statistical data confidentiality, Luxemburg, 2003.
20
P Van der Laan, “Integrating administrative registers and
household surveys” (2000) 15 Netherlands
Official Statistics, Statistics Netherlands,
15.
21
Ibid. 17; Public objections to the 1971 Census were instrumental in
the Dutch Parliament’s decision to revoke the legal obligation
to perform a population Census.
23
P Kooiman, J R Nobel and L C Willenborg, “Data Protection at
Statistics Netherlands” (1999) 14 Netherlands
Official Statistics, special issue
Disclosure Control, Statistics Netherlands, Voorburg/Heerlen, 1999.
24
P Van der Laan 2000, See
note 20; The English name for this is the Social Statistical
Database.
26
L Willenborg and T deWaal, “Information
Loss through global recoding and local suppression” (1999) 14
Netherlands Official Statistics,
special issue Disclosure Control, Statistics Netherlands,
Voorburg/Heerlen.
27
P Kooiman et al, 1999 See
note 23.
28
J Nobel, “Informed Consent: Buzzword or Panacea”
Proceedings of the ECE/Eurostat Conference,
Thessaloniki, March 1999, 1.
29
P Kooiman et al 1999, See
note 23.
30
T Holt, “The Statistics and Registration Service Act”
(2007) Vol. 4 (4) Significance,
182 – 183.
31
Office for National Statistics,
, Statistics: A Matter of Trust, (1998),
Report on the Consultation Exercise 24 February – 31 May 1998,
Office for National Statistics.
32
See Statistics
Netherlands, Special Issue, Integrating administrative registers and
household surveys, Vol. 15, Voorburg/Heerlen, (2000).
33
P Jackson, 2003, See
note 18.
34
Before the introduction of the Act some administrative data was made
available to ONS and its predecessors for example the Population
Statistics Act 1938 requires administrative data on life events to
be provided to the Registrars General for statistical purposes.
35
6. P, C Bellamy, C Raab, A Warren and C Heeney, “Institutional
Shaping of Interagency, Working: Managing Tensions between
Collaborative Working and Client Confidentiality” 17 (3)
Journal of Public Administration Research and
Theory,
405.
36
6. P et al, See note
35.
37
S L Star & J R Griesemer, “Institutional Ecology,
'Translations' and Boundary Objects: Amateurs and Professionals in
Berkeley's Museum of Vertebrate Zoology, 1907-39.” (1989)
19(3) Social Studies of Science,
387-420.
38
S Timmermans & M Berg “Standardization in action:
Achieving local universality through medical protocols” (1997)
27(2) Social Studies of Science,
273-305 at 274.
39
M Cross, “Keeping the NHS electronic spine on track”
(2006) 332(7542) British Medical Journal,
659-8.
40
T Holt, 2007, See
note 30
42
Statistics and Registration Services Act 2007, Section 1(1),
Section 7 (1).
43
Ibid. Section 39 (10).
44
Ibid. Section 43 (3a – c).
45
Ibid. Section 43 (5) Section 44 covers the same in relation to
Wales.
46
Ibid. Section 47(1a and b).
47
Statistics and Registration Services Act 2007, Sections 17 and 19.
48
D Wroe, 1998, See
note 3.
49
The Office for National Statistics, “Proposal for an
integrated population system” (2003) Office
for National Statistics, October 2003, at:
http://www.statistics.gov.uk/downloads/theme_population/ipss.pdf.
This issue has grown in importance as a variety of government
departments and bodies have been encouraged to share information on
everything from monitoring the vulnerable and potentially dangerous
individuals (6 P et al, see note 35).
50
M Cross, 2006, See
note 39. Other parts of the research community are moving towards
the building of large databases to allow the sharing of data by
cancer-geneticists see Cancer Research UK, National cancer tissue
bank now open for donations, Press Release, Wednesday 5 September
2007.
51
Wellcome Trust, “Report on the Clinical Research Collaboration
and Wellcome Trust Frontiers Meeting on the Use of Electronic
Patient Records for Research and Health Benefit” held 24 and
25 May 2007, at:
http://tinyurl.com/5t39eq.
53
These can be seen as poles of a debate which is current in many
spheres and is sometimes seen as a matter of balance between these
two central values in a post-enlightenment society, whose value
system can be broadly said to reflect liberal moral and political
ideals.
56
K Marquis, S Wetrogan and H Palacios, U.S. Census Bureau, “Towards
a U.S. Population Data Base from Administrative Records”
(1996) Proceedings of the Government Statistics Section, American
Statistical Association, 117 -122.
57
H Nissenbaum, “Protecting Privacy in an Information Age: The
Problem of Privacy in Public” (1998) Law
and Philosophy, 559-596.
59
W W Lowrance, “Learning for Experience: Privacy and Secondary
Use of Data in Health Research” 2002 The
Nuffield Trust.
60
Statistics and Registration Services Act 2007, Section 39 (2).
63
D Soleve, “Privacy and Power: Computer Databases and Metaphors
for Information Privacy” (2001) 53 Stanford
Law Review, 1393 - 1462.
64
Privacy Commissioner of Canada, Annual Report 1999 -2000, 64 -71.
67
Office for National Statistics, “Statistics: A Matter of
Trust” Report on the Consultation Exercise 24 February –
31 May 1998, Office for National Statistics, 1998.
68
T Holt, 2007, See
note 30.
69
National Statistics, Proposals for an Integrated Population
Statistics System, Discussion Paper Office for National Statistics,
October 2003, Crown Copyright, 2003.
71
Jackson 2003, See
note 18.
72
S L Star & J R Griesemer 1989 See
note 37.
73
Nissenbaum 1998, See
note 57.
74
Nobel 1999, See note
28.