Balancing information governance obligations when accessing social care data for collaborative research
| Date | 11 March 2019 |
| DOI | https://doi.org/10.1108/RMJ-09-2018-0029 |
| Published date | 11 March 2019 |
| Pages | 194-209 |
| Author | Malkiat Thiarai,Sarunkorn Chotvijit,Stephen Jarvis |
| Subject Matter | Information & knowledge management,Information management & governance |
Balancing information
governance obligations when
accessing social care data
for collaborative research
Malkiat Thiarai,Sarunkorn Chotvijit and Stephen Jarvis
Department of Computer Science, University of Warwick, Coventry, UK
Abstract
Purpose –Thereissignificant national interestin tackling issues surrounding the needs of vulnerable children
and adults. This paper aims to argue that much value can be gained from the application of new data-analytic
approaches to assist with the care provided to vulnerable children. This paper highlights the ethical and
information governance issues raised in the development of a research project that sought to access and analyse
children’s social care data.
Design/methodology/approach –The paper documents theprocess involved in identifying, accessing
and using data held in BirminghamCity Council’s social care system for collaborativeresearch with a partner
organisation. This includesidentifying the data, its structure and format; understanding the Data Protection
Act 1998 and 2018 (DPA) exemptionsthat are relevant to ensure that legal obligations are met; data security
and access management;the ethical and governance approval process.
Findings –The findings will include approaches to understanding the data, its structure and accessibility tasks
involved in addressing ethical and legal obligations and requirements of the ethical and governance processes.
Originality/value –The aim of this research is to highlight the potential use of use new data-analytic
techniques to examinethe flow of children’s social care data from referral, through the assessmentprocess, to
the resulting service provision. Data held by Birmingham City Council are used throughout, and this paper
highlights key ethicaland information governance issues which were addressed in preparingand conducting
the research.The findings provide insight for other data-led studiesof a similar nature.
Keywords Public sector, Ethics, Governance, Information management, Legislation
Paper type Case study
Introduction
Researchers wanting to work with or use personal data within their research will be familiar
with the requirement to ensure that the use of the data meets both legal and ethical standards.
In support of these requirements, there are established legal and ethical frameworks within
which research using personal data must be conducted.
© Malkiat Thiarai, Sarunkorn Chotvijit and Stephen Jarvis. Published by Emerald Publishing
Limited. Thisarticle is published under the CreativeCommons Attribution (CC BY4.0) licence. Anyone
may reproduce,distribute, translate and createderivative works of this article (for bothcommercial and
non-commercial purposes), subject to full attribution to the original publication and authors. The full
terms of thislicence may be seen at http://creativecommons.org/licences/by/4.0/legalcode
The lead author gratefully acknowledges funding support by the UK Engineering and Physical
Sciences Research Council (EPSRC) and Alan Turing Institute (ATI) for the Centre for Doctoral
Training in Urban Science and Progress under Grant number [EP/L016400/1] and [EP/N510129/1]
respectively. The authors are also grateful to Birmingham City Council for supporting this research.
RMJ
29,1/2
194
Received23 September 2018
Revised20 December 2018
3 January2019
Accepted3 January 2019
RecordsManagement Journal
Vol.29 No. 1/2, 2019
pp. 194-209
EmeraldPublishing Limited
0956-5698
DOI 10.1108/RMJ-09-2018-0029
The current issue and full text archive of this journal is available on Emerald Insight at:
www.emeraldinsight.com/0956-5698.htm
In the UK, the Data Protection Act 2018 (which repealed the Data Protection Act 1998 in
May 2018) is the principal piece of legislation governing the use of personal data. Several
additional sources of guidance and good practice are available for researchers in the UK,
including the UKRIO Code of Practice forResearch: Promoting good practice and preventing
misconduct (UKRIO, 2009) and the RCUK Policy and Guidelines on Governance of Good
Research Conduct(RCUK, 2013) that set out key principles to effective research governance.
Background
The data associated with this research project is held by Birmingham City Council and are
recorded as part of the Council’s statutory duty to provide social services for a “child in
need”: This term is statutory and is defined in the Children Act 1989 (the “1989 Act”). Any
child can be a “child in need”, even if they are living with their family. A child is someone
who is under 18 years of age.
There is no need for a court order to be madefor a child to be deemed in need. It is the role
of a local authority’s children’s services department to assess and provide services in this
regard. Being a child in need is thereforebroader than just those children in local authority
care further to a care order, or those provided with accommodation by the local authority
under section 20 of the 1989Act.
Section 17 of the 1989 Act defines a child in need as follows:
He is unlikely to achieve or maintain, or to have the opportunity of achieving or
maintaining, a reasonable standard of health or development without the provision
for him of services by a local authority under this Part.
His health or development is likely to be significantly impaired, or further impaired,
without the provision for him of such services.
He is disabled.
Under the 1989 Act, “every local authorityshall take reasonable steps to identify the extent
to which there are childrenin need within their area”, as well as to publish information about
the services it provides to childrenin need (and other groups) and to “take such steps as are
reasonably practicable to ensure thatthose who might benefit from the services receive the
information relevantto them”.
In addition to the services that local authorities provide for all children, the 1989 Act
specifies the range of servicesthat can be made available for a child in need:
advice, guidance and counselling;
occupational, social, cultural, or recreational activities;
home help (which may include laundry facilities);
facilities for,or assistance with, travelling to and from homefor the purpose of taking
advantageof any other service provided under the 1989 Act or of any similarservice;
assistance to enable the child concerned and his family to have a holiday;
maintenance of the family home if the child is in need (but is not a looked after child)
and is living apart from their family to either to enable the child to live with their
family, or to promote contact between the child and their family;
day care if the child is under 5 years of age but is not yet attending school;
care or supervised activities (either outside school hours or during school holidays)
for a child attending any school; and
providing accommodation to a child and their family.
Social care
data for
collaborative
research
195
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