Ethical Issues in Involving Service Users in Research

2011 ◽  
pp. 43-64 ◽  
Keyword(s):  
Ethical Issues ◽  
Service Users

scholarly journals Ethical issues related to eHealth: An integrative review

2020 ◽  
pp. 096973302094576
Author(s):  
Anu Jokinen ◽  
Minna Stolt ◽  
Riitta Suhonen
Keyword(s):  
Social Care ◽  
Ethical Issues ◽  
Empirical Studies ◽  
Cochrane Library ◽  
Service Users ◽  
The Social ◽  
User Access ◽  
Ehealth Services ◽  
Academic Search

Background: Identifying and safeguarding ethics in eHealth services from the service users’ perspective in social care and healthcare is important. The use of eHealth services should not prejudice the quality of services or the social interaction required in care. There is a lack of studies about the ethics of eHealth services from the service users’ perspective. Aim: The aim of this study is to identify and analyse ethical issues related to eHealth in social care and healthcare from the service users’ perspective. Research design: An integrative literature review. Ethical considerations: The review followed good scientific conduct. Research context and data sources: A systematic literature search was performed using CINAHL, Scopus, PubMed/MEDLINE, Web of Science, Cochrane Library and Academic Search Premier to find relevant empirical studies published in English from their earliest up to 30 November 2018. In addition, reference lists from the identified research papers were searched. A quality appraisal of each paper included in the review was conducted before thematic analysis. Results: In total, 26 studies were included in the review, and from these four ethical themes were identified: (1) privacy in eHealth, (2) beneficence and nonmaleficence in eHealth, (3) justice in eHealth and (4) trust in eHealth. The ethical issues within these themes were related to information sharing; ownership; access to information and data protection; informed consent; defence of rights; and equity, equality and proportionality of response. Conclusion: eHealth inequality occurs in social care and healthcare. eHealth service designers and social care and healthcare professionals need to act to maintain and improve user access and data accuracy and provide different levels of security in eHealth services, relative to the information stored. There is a need for further research about ethical issues of eHealth from the user’s perspective, including the customer-oriented availability and usability of eHealth services which avoid discrimination.

The legal, governance and ethical implications of involving service users and carers in research

2019 ◽  
Vol 32 (5) ◽  
pp. 818-831
Author(s):  
Virginia Minogue ◽  
Mary Cooke ◽  
Anne-Laure Donskoy ◽  
Penny Vicary
Keyword(s):  
Service User ◽  
Research Study ◽  
Ethical Issues ◽  
Research Process ◽  
Project Team ◽  
Research Management ◽  
Service Users ◽  
Content Type ◽  
Team Members ◽  
Ethical Implications

Purpose Service user and carer involvement in all aspects of the health and care research process, from co-applicant on funding applications to active engagement in a research study, is now a requirement for most research funders. However, as co-production increases and service users and carers take on more responsibilities, this involvement has legal, governance and ethical implications. The purpose of this paper is to raise awareness of the issues and consider potential solutions. Design/methodology/approach Experiences of engagement as co-applicants in research funding applications, of involvement as research study team members, and as co-researchers were gathered from a range of service user and carer experts. Consultation and a workshop gathered further evidence from a range of stakeholders across the research management community. Findings Service users and carers, who contribute to the research protocol and process, feel a strong sense of responsibility to ensure the high quality of a research study. However, they may be new to their roles, status and key responsibilities when acting as project team members, co-researchers or co-applicants engaging in funding applications. The responsibility of sponsors, grant holding organisations, funders and other members of the research community is to communicate with and support service users and carers in those roles. More needs to be done to understand the contractual, a legal and governance issues and responsibilities that are specific to service user and carer co-applicants, project team members and co-researchers, from both an organisational and individual service user and carer perspective. Practical implications The implications of the findings are to raise awareness of the practical, legal and ethical issues arising from this type of involvement and the potential risks arising from lack of cohesion or understanding. The review also highlights the concerns and barriers service users and carers may find in becoming involved. Originality/value The findings highlight a range of issues for research regulators, sponsors and investigators to consider to ensure service users and carers can fulfil their responsibilities and be supported in doing so.

scholarly journals Ethical Considerations for Participatory Health through Social Media: Healthcare Workforce and Policy Maker Perspectives

2020 ◽  
Vol 29 (01) ◽  
pp. 071-076
Author(s):  
Octavio Rivera-Romero ◽  
Stathis Konstantinidis ◽  
Kerstin Denecke ◽  
Elia Gabarrón ◽  
Carolyn Petersen ◽  
...  
Keyword(s):  
Social Media ◽  
Quality Assurance ◽  
Data Security ◽  
Digital Literacy ◽  
Data Privacy ◽  
Healthcare Professionals ◽  
Ethical Issues ◽  
Point Of View ◽  
Service Users ◽  
Policy Makers

Summary Objectives: To identify the different ethical issues that should be considered in participatory health through social media from different stakeholder perspectives (i.e., patients/service users, health professionals, health information technology (If) professionals, and policy makers) in any healthcare context. Methods: We implemented a two-round survey composed of open ended questions in the first round, aggregated into a list of ethical issues rated for importance by participants in the second round, to generate a ranked list of possible ethical issues in participatory health based on healthcare professionals’ and policy makers’ opinions on both their own point of view and their beliefs for other stakeholders’ perspectives. Results: Twenty-six individuals responded in the first round of the survey. Multiple ethical issues were identified for each perspective. Data privacy, data security, and digital literacy were common themes in all perspectives. Thirty-three individuals completed the second round of the survey. Data privacy and data security were ranked among the three most important ethical issues in all perspectives. Quality assurance was the most important issue from the healthcare professionals’ perspective and the second most important issue from the patients’ perspective. Data privacy was the most important consideration for patients/service users. Digital literacy was ranked as the fourth most important issue, except for policy makers’ perspective. Conclusions: Different stakeholders’ opinions fairly agreed that there are common ethical issues that should be considered across the four groups (patients, healthcare professionals, health IT professionals, policy makers) such as data privacy, security, and quality assurance.

Opportunities and Risks of Self-Binding Directives: Results from Interview Studies with Stakeholders in Germany and The Netherlands

2021 ◽  
Vol 66 (Special Issue) ◽  
pp. 161-161
Author(s):  
Matthé Scholten ◽  
◽  
Laura Van Melle ◽  
Jakov Gather ◽  
Yolande Voskes ◽  
...  
Keyword(s):  
Mental Health ◽  
The Netherlands ◽  
Ethical Issues ◽  
Service Users ◽  
Mental Health Crisis ◽  
Health Crisis ◽  
Coercive Treatment ◽  
Legal Provisions ◽  
Qualitative Interview Study ◽  
Psychiatric Advance Directive

"Self-binding directives (SBDs) are a special type of psychiatric advance directive in which service users agree in advance to (coercive) treatment they might late refuse during a mental health crisis. SBDs aim to empower and protect service users by enabling them to state their values and to plan their (coercive) treatment in advance in consultation with the treating psychiatrist. SBDs have been widely discussed in the ethics literature. Topics include ethical issues surrounding competence, revocation and the ethical justification of involuntary commitment and treatment based on SBDs. Little empirical research on SBDs has been conducted thus far. The Netherlands is to the best of our knowledge the only country with explicit legal provisions for SBDs. On the 1st of January 2020, the new Dutch Law on Compulsory Mental Health Care (Wvggz) entered into force. The implications of this law for the use of SBDs are still unclear. In this presentation, we will present insights from a qualitative interview study on stakeholders’ experiences with SBDs under the new law and their views on the ethical opportunities and challenges of SBDs. Based on the results, we give recommendations for the implementation of SBDs in other European countries. "

scholarly journals Building knowledge for policy and practice based on service user and carer experiences: A case study of Scottish adult safeguarding research

2020 ◽  
pp. 146801732095204
Author(s):  
Fiona Sherwood-Johnson ◽  
Kathryn Mackay
Keyword(s):  
Service User ◽  
Ethical Issues ◽  
Service Users ◽  
Research Projects ◽  
Policy And Practice ◽  
Policy Makers ◽  
Or Practice ◽  
Ongoing Dialogue ◽  
Participative Approaches

Summary This article presents Scottish adult safeguarding as a case study to illuminate some challenges of building knowledge for policy and practice based on service user and carer voices. It draws on five of our own research projects that have evaluated implementation of Scottish adult safeguarding legislation and/or asked more exploratory questions about risk, safety and support. Findings We show how practical and ethical issues limited our more evaluative lines of inquiry. We then show how increasingly participative approaches led to studies that were more accessible and that connected more deeply with service users’ and carers' lives, but that also faced greater challenges in the translation of their findings back into the policy and/or practice environment. Applications We conclude with an argument for ongoing dialogue between policy-makers, professionals, service users and carers, researchers, educators and students about knowledge, its different forms and sources, its generation and its use.

Ethics and research in psychiatry: Engagement with patients and public

2020 ◽  
pp. 71-82
Author(s):  
Stephani L. Hatch ◽  
Billy Gazard ◽  
Diana Rose
Keyword(s):  
Public Engagement ◽  
Public Involvement ◽  
Ethical Issues ◽  
Patient And Public Involvement ◽  
Psychiatric Research ◽  
Significant Shift ◽  
Service Users ◽  
Participatory Action ◽  
The Public ◽  
Patient And Public Engagement

This chapter explores the ethical issues that arise in psychiatric research in relation to engagement with patients and the general public. Over the past decade, there has been a significant shift in psychiatric and other medical research that places an emphasis on the engagement and involvement of patients and the public. This shift has resulted in changes in the expectations of the way research is conducted and disseminated, specifically regarding the level of scientific knowledge that should be accessible to service users and the public. The chapter begins by making the distinction between patient and public engagement and patient and public involvement. It then discusses basic ethical principles as they relate to engagement, and provides examples of how patient and public engagement is situated within psychiatric research agendas, particularly as it relates to participatory action approaches. It concludes with three brief case studies of engagement approaches in psychiatric research with discussion of ethical issues that may arise in different types of engagement.

Confronting the grey zone after severe brain injury

2019 ◽  
Vol 3 (6) ◽  
pp. 707-711 ◽  
Author(s):  
Andrew Peterson ◽  
Adrian M. Owen
Keyword(s):  
Brain Injury ◽  
Ethical Issues ◽  
Vegetative State ◽  
Clinical Care ◽  
Grey Zone ◽  
Severe Brain Injury ◽  
New Methods ◽  
Legal Decision Making ◽  
Technological Developments ◽  
The Brain

In recent years, rapid technological developments in the field of neuroimaging have provided several new methods for revealing thoughts, actions and intentions based solely on the pattern of activity that is observed in the brain. In specialized centres, these methods are now being employed routinely to assess residual cognition, detect consciousness and even communicate with some behaviorally non-responsive patients who clinically appear to be comatose or in a vegetative state. In this article, we consider some of the ethical issues raised by these developments and the profound implications they have for clinical care, diagnosis, prognosis and medical-legal decision-making after severe brain injury.

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