Respecting privacy in care services
| Published date | 28 November 2019 |
| DOI | https://doi.org/10.1108/JAP-06-2019-0020 |
| Date | 28 November 2019 |
| Pages | 276-284 |
| Author | Peter Bates,Brendan McLoughlin |
| Subject Matter | Health & social care,Vulnerable groups,Adult protection,Safeguarding,Sociology,Sociology of the family,Abuse |
Respecting privacy in care services
Peter Bates and Brendan McLoughlin
Abstract
Purpose –In care homes concerns about abuse have established a culture where all information pertaining
to a person must be shared, and little attention is paid to privacy in its broader sense. The purpose of this
paper is to take a human rights perspective and consider how information governance may impact on the
health, well-being and quality of life of residents. It proposes a proactive approach and presents a template
for a privacy impact assessment which services could use to improve their approach to privacy, protecting
the human rights of those in their care, contributing to their independence and improving outcomes.
Design/methodology/approach –A review of historical and current thinking about the value of privacy in
human services and wider society leads to a series of challenges to the way in which privacy is upheld in
residential care services.
Findings –Recent preoccupations with data privacy have led to a myopic neglect of broader considerations
of privacy. Whilst it continues to be important to protect the confidentiality of personal data and to ensure that
residents are protected from abuse, human services that provide 24 hour care in congregated settings must
not neglect broader components of privacy.
Research limitations/implications –Privacy impact assessments have been widely used to check
whether data privacy is being upheld. The broader concept that might be termed “Big Privacy”is introduced
within which data privacy is but one section. It is suggested that big privacy is severely compromised in
residential care settings, thus denying residents their human right to privacy. The extent of such violation of
rights should be investigated.
Practical implications –Having set out the potential reach of the human right to privacy, important work
needs to be done to find out how privacy might be upheld in the real world of congregate residential care.
Some service providers may have solutions to the organisational challenges, have addressed staff training
needs and revised risk assessment strategies so that privacy is upheld alongside other rights.
Social implications –Nearly half a million people live in congregate residential care settings in England, and
deprivation of privacy is argued to be a significant deprivation of human rights. Occasional tragedies and
scandals in congregate settings create pressure for increasing the level of surveillance, and the right to
privacy is sacrificed. This paper offers a challenge to this process, arguing that competing rights need to be
balanced and privacy is an essential component of a decent quality of life.
Originality/value –Personal growth and development depends to some extent on choice and control over
access to privacy. Recent changes in the law regarding data protection have narrowed our thinking about
privacy until it is a small concept, largely concerned with data handling. This paper invites consideration of big
privacy, and invites congregate residential care settings to consider how a deep and broad definition of
privacy could transform these services.
Keywords Culture, Privacy, Rights, Information governance, Confidentiality, Care system
Paper type Viewpoint
Introduction: confidentiality vs privacy
Despite its place in faith traditions, ancient law, the Universal Declaration of Human Rights, and
the constitutions of over 150 countries (Constitute, 2019), privacy lacks a clear, shared definition
(Koops et al., 2016; Green et al., 2018). It is, however, distinct from confidentiality:
Confidentiality pertains to the treatment of information that an individual has disclosed in a relationship
of trust and with the expectation that it will not be divulged to others without permission in ways that
are inconsistent with the understanding of the original disclosure.
Privacy is the control over the extent, timing, and circumstances of sharing oneself (physically,
behaviourally, or intellectually) with others. University of California (2019)
Received 26 June 2019
Revised 10 September 2019
Accepted 10 September 2019
No funding was received in relation
to this paper. The authors declare
that the authors have no
competing interests.
Peter Bates is based at
Peter Bates Associates,
Nottingham, UK.
Brendan McLoughlin is based
at Efficacy, London, UK.
PAGE276
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THE JOURNAL OF ADULT PROTECTION
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VOL. 21 NO. 6 2019, pp. 276-284, © Emerald Publishing Limited, ISSN 1466-8203 DOI 10.1108/JAP-06-2019-0020
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