Journal of Adult Protection, 21(6), 2019, pp.276-284.
Publisher:
Emerald
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 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.
(Edited publisher 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 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.
(Edited publisher abstract)
Subject terms:
privacy, literature reviews, data protection, care providers, confidentiality, residential care, human rights;
Howard Journal of Criminal Justice, 49(4), September 2010, pp.340-348.
Publisher:
Wiley
In December 2009 the UK Home Office announced the government’s new policy of publicising the criminal court judgments on individual offenders to the local communities in which those offenders live. The Home Office stated that this is public information obtained from the public forum of the criminal court, and that such publicising is merely enhancing the job previously carried out by local reporters and newspapers covering the local criminal court. The initiative follows the 2008 Casey report that aimed to find ways to reassure the general public on matters of confidence in the criminal justice system. The authors discuss how this initiative might work in practice, based on earlier experiences of making offenders more visible to the communities from which they come.
In December 2009 the UK Home Office announced the government’s new policy of publicising the criminal court judgments on individual offenders to the local communities in which those offenders live. The Home Office stated that this is public information obtained from the public forum of the criminal court, and that such publicising is merely enhancing the job previously carried out by local reporters and newspapers covering the local criminal court. The initiative follows the 2008 Casey report that aimed to find ways to reassure the general public on matters of confidence in the criminal justice system. The authors discuss how this initiative might work in practice, based on earlier experiences of making offenders more visible to the communities from which they come.
Subject terms:
human rights, law courts, privacy, access to information, communities, ex-offenders;
This article reports on a multi-method case study investigating the effect of staff behaviour on patient dignity. Qualitative data was collected via interviews with patients and staff, participant observation and document examination. The results indicate that patient dignity is promoted when staff provided privacy and use interactions that help patients feel comfortable, in control and valued.
This article reports on a multi-method case study investigating the effect of staff behaviour on patient dignity. Qualitative data was collected via interviews with patients and staff, participant observation and document examination. The results indicate that patient dignity is promoted when staff provided privacy and use interactions that help patients feel comfortable, in control and valued. Individual staff behaviour as a major impact on whether threats to patient dignity actually lead to its loss.
Subject terms:
human rights, patients, privacy, attitudes, communication, dignity, health professionals;
GREEN Caroline Emmer De Albuquerque, TINKER Anthea, MANTHORPE Jill
Journal article citation:
Working with Older People, 22(4), 2018, pp.198-210.
Publisher:
Emerald
Purpose: The purpose of this paper is to review and discuss evidence of good practice in respecting care home residents’ right to privacy. The right to privacy is a fundamental human right as enshrined in international and domestic law and standards. In the context of increasing interest in using a human rights approach to social care in care homes for older people, this literature review summarises research evidence on what respecting the human right to privacy of care home residents entails in practice. Design/methodology/approach: This literature review followed a rigorous systematic approach to the scoping review, inspired by the Joanna Biggs Institute’s guidelines for conducting systematic reviews. A total of 12 articles were included in the review. Findings: The research took a multidimensional understanding of privacy in their studies. The dimensions can be categorised as physical, inter-relational or related to personal data. The review highlights three good practice points. First, it is good privacy practice in care homes to make available single-occupancy bedrooms to residents since this offers the opportunity to personalising this physical space with furniture and web belongings, privacy considerations were relevant to communal living areas within care homes, including the use of surveillance cameras and the sharing of personal data. Originality/value: This literature review adds to the body of academic literature on human rights and social care in practice. It also highlights areas for future research relating to the right to privacy in care homes.
(Publisher abstract)
Purpose: The purpose of this paper is to review and discuss evidence of good practice in respecting care home residents’ right to privacy. The right to privacy is a fundamental human right as enshrined in international and domestic law and standards. In the context of increasing interest in using a human rights approach to social care in care homes for older people, this literature review summarises research evidence on what respecting the human right to privacy of care home residents entails in practice. Design/methodology/approach: This literature review followed a rigorous systematic approach to the scoping review, inspired by the Joanna Biggs Institute’s guidelines for conducting systematic reviews. A total of 12 articles were included in the review. Findings: The research took a multidimensional understanding of privacy in their studies. The dimensions can be categorised as physical, inter-relational or related to personal data. The review highlights three good practice points. First, it is good privacy practice in care homes to make available single-occupancy bedrooms to residents since this offers the opportunity to personalising this physical space with furniture and web belongings, adding a sense of ownership over the space. Second, residents appreciate being able to choose when and how they spend their time in their own bedrooms. Third, it is good practice to respect residents’ private physical space and private choices, for example by knocking on doors before entering or agreeing with the resident when it is permissible to enter. The review also found that in some studies privacy considerations were relevant to communal living areas within care homes, including the use of surveillance cameras and the sharing of personal data. Originality/value: This literature review adds to the body of academic literature on human rights and social care in practice. It also highlights areas for future research relating to the right to privacy in care homes.
(Publisher abstract)
Subject terms:
good practice, care homes, older people, literature reviews, rights, privacy, residential care, human rights;
This report focuses on the way in which the data of unaccompanied asylum-seeking children is handled, and whether information-sharing practices conform to data protection and human rights requirements. Questionnaires were sent to 134 local authorities, and responses received from 120. The research revealed a high level of concern amongst local authority staff and refugee organisations about the way in which children’s sensitive data may be shared, both between agencies and with central government. The first section of the report considers current practice and the law regarding the procedures for the collection, storage and use of the sensitive data collected from unaccompanied children. It particularly looks at the controversy surrounding the process of assessing a child’s age, and whether these procedures comply with human rights and data protection requirements. The second section of the report examines the systems and processes used to support information storage and sharing, in particular examining the National Register of Unaccompanied Children (NRUC).
This report focuses on the way in which the data of unaccompanied asylum-seeking children is handled, and whether information-sharing practices conform to data protection and human rights requirements. Questionnaires were sent to 134 local authorities, and responses received from 120. The research revealed a high level of concern amongst local authority staff and refugee organisations about the way in which children’s sensitive data may be shared, both between agencies and with central government. The first section of the report considers current practice and the law regarding the procedures for the collection, storage and use of the sensitive data collected from unaccompanied children. It particularly looks at the controversy surrounding the process of assessing a child’s age, and whether these procedures comply with human rights and data protection requirements. The second section of the report examines the systems and processes used to support information storage and sharing, in particular examining the National Register of Unaccompanied Children (NRUC).
Subject terms:
human rights, law, privacy, unaccompanied asylum seeking children, access to information, asylum seekers, childrens rights, confidentiality, data protection;
This guide discusses what dignity is, why it matters and how to assess whether an organisation or service treats the people whom it serves with dignity and respect. The first two chapters provide an introduction by discussing definitions of dignity and then looking at the national context. The next three chapters focus on scrutiny reviews in more detail, looking at the questions that should be asked, where to obtain the evidence, who to consult, and making recommendations. The final chapter provides a list of useful resources. The guide is intended for local authority Overview and Scrutiny Committees (OSCs) but is relevant to others.
This guide discusses what dignity is, why it matters and how to assess whether an organisation or service treats the people whom it serves with dignity and respect. The first two chapters provide an introduction by discussing definitions of dignity and then looking at the national context. The next three chapters focus on scrutiny reviews in more detail, looking at the questions that should be asked, where to obtain the evidence, who to consult, and making recommendations. The final chapter provides a list of useful resources. The guide is intended for local authority Overview and Scrutiny Committees (OSCs) but is relevant to others.
Subject terms:
human rights, performance evaluation, person-centred care, privacy, social care, social care provision, dignity, health care;
Diversity in Health and Social Care, 3(2), 2006, pp.89-98.
Publisher:
Radcliffe Publishing
... Zimbabwean men and women living in London and surrounding areas were interviewed and invited to take part in focus groups to discuss their experiences as migrants to the UK. A grounded-theory approach was used to identify three themes: the meanings of Ubuntu-Hunhu, Ubuntu-Hunhu as a basis for privacy, and Ubuntu-Hunhu in clinical settings. Although all of the respondents reported that they were aware
This article is based on the argument that inside evolving African cultures, there are resources that could be useful human rights and ethical tools. These cultural resources can be harnessed in conducting research on sensitive topics such as HIV or used to deliver health promotion interventions. A key cultural resource, based on evolving Zimbabwean cultural traditions, is the notion of Ubuntu-Hunhu, which is grounded in respect, humanity and the interconnectedness of beings. This concept can be a useful resource in upholding confidentiality, a central requirement in research ethics and the delivery of health promotion interventions. The aim of this qualitative study was to explore the meaning of Ubuntu-Hunhu, and the application of this concept in helping those with HIV. Thirty HIV-positive Zimbabwean men and women living in London and surrounding areas were interviewed and invited to take part in focus groups to discuss their experiences as migrants to the UK. A grounded-theory approach was used to identify three themes: the meanings of Ubuntu-Hunhu, Ubuntu-Hunhu as a basis for privacy, and Ubuntu-Hunhu in clinical settings. Although all of the respondents reported that they were aware of the meanings of confidentiality as used by Western health and social care providers. The study showed that the use of Ubuntu-Hunhu concepts that link the entitlements of individuals with communal responsibilities and duties provides an important ethical tool for clarifying what research participants understand confidentiality to be.
Subject terms:
HIV AIDS, human rights, privacy, user views, African people, attitudes, confidentiality, cultural identity;
The authors report the results of a survey of state initiatives that measure resident satisfaction in nursing homes and assisted living facilities, and we describe several model programmes for legislators and public administrators contemplating the initiation of their own state programmes. Data on state initiatives and programmes were collected during March and April 2000 through a mailed questionnaire and follow-up telephone interviews and were current as of September 2002. Of the 50 states surveyed, 50 responses were received (response rate = 100%); 12 states (24%) reported the use of consumer satisfaction measures, and 7 (Florida, Iowa, Ohio, Oregon, Texas, Vermont, and Wisconsin) reported using resident satisfaction data within their consumer information systems for nursing homes or assisted living facilities. Additionally, 2 states (Iowa and Wisconsin) use resident satisfaction data for facility licensing and recertification. The design of the instruments and collection methods vary in these states, as do the reported response rates, per-resident cost, and the purpose for satisfaction data collection. State satisfaction efforts are in an early stage of development. Well-produced, easily understandable reports on nursing home and assisted living quality could provide information and guidance for patients and families contemplating the utilization of long-term care services. Dissemination of quality information may also facilitate sustained quality and efficiency improvements in long-term care facilities and thus enhance the quality of care for and quality of life of long-term care residents.
The authors report the results of a survey of state initiatives that measure resident satisfaction in nursing homes and assisted living facilities, and we describe several model programmes for legislators and public administrators contemplating the initiation of their own state programmes. Data on state initiatives and programmes were collected during March and April 2000 through a mailed questionnaire and follow-up telephone interviews and were current as of September 2002. Of the 50 states surveyed, 50 responses were received (response rate = 100%); 12 states (24%) reported the use of consumer satisfaction measures, and 7 (Florida, Iowa, Ohio, Oregon, Texas, Vermont, and Wisconsin) reported using resident satisfaction data within their consumer information systems for nursing homes or assisted living facilities. Additionally, 2 states (Iowa and Wisconsin) use resident satisfaction data for facility licensing and recertification. The design of the instruments and collection methods vary in these states, as do the reported response rates, per-resident cost, and the purpose for satisfaction data collection. State satisfaction efforts are in an early stage of development. Well-produced, easily understandable reports on nursing home and assisted living quality could provide information and guidance for patients and families contemplating the utilization of long-term care services. Dissemination of quality information may also facilitate sustained quality and efficiency improvements in long-term care facilities and thus enhance the quality of care for and quality of life of long-term care residents.
Subject terms:
human rights, long stay care, nursing homes, older people, privacy, quality assurance, care homes, dementia;
... of nearly 1,500 eligible ALFs were interviewed by telephone. As of 1998, there were an estimated 11,459 ALFs nationwide, with 611,300 beds and 521,500 residents. Nearly 60% offered a combination of low services and low or minimal privacy, whereas only 11% offered relatively high services and high privacy. Seventy-three percent of the resident rooms or apartments were private. Aging-in-place was limited
Throughout the 1990s, assisted living was the most rapidly growing form of senior housing. The purpose of this paper is to describe the existing supply of assisted living facilities (ALFs) and examine the extent to which they matched the philosophy of assisted living. The study involved a multistage sample design to produce nationally representative estimates for the ALF industry. Administrators of nearly 1,500 eligible ALFs were interviewed by telephone. As of 1998, there were an estimated 11,459 ALFs nationwide, with 611,300 beds and 521,500 residents. Nearly 60% offered a combination of low services and low or minimal privacy, whereas only 11% offered relatively high services and high privacy. Seventy-three percent of the resident rooms or apartments were private. Aging-in-place was limited by discharge policies in most ALFs for residents who needed help with transfers, had moderate to severe cognitive impairment, had any behavioral symptoms, or needed nursing care. The industry is largely private pay and unaffordable for low- or moderate-income persons aged 75 unless they use assets as well as income to pay. ALFs differed widely in ownership, size, policies, and the degree to which they manifested the philosophy of assisted living. This diversity represents a challenge for consumers in terms of selecting an appropriate facility and for policy makers in terms of deciding what role they want assisted living to play in long-term care.
Subject terms:
human rights, long stay care, nursing homes, older people, privacy, quality assurance, surveys, care homes, dementia;
Includes guidance and commentary on the Act and related legislation and codes, including the the Freedom of Information Act 2000, the Regulation of Investigatory Powers Act 2000, the Lawful Business Practice Regulations 2000, and the forthcoming code of practice on the use of personal data in employer/employee relationships
Includes guidance and commentary on the Act and related legislation and codes, including the the Freedom of Information Act 2000, the Regulation of Investigatory Powers Act 2000, the Lawful Business Practice Regulations 2000, and the forthcoming code of practice on the use of personal data in employer/employee relationships
Subject terms:
information technology, human rights, interpersonal relationships, law, privacy, confidentiality, data protection, employment;