Investigating Mental Health Service User Opinions on Clinical Data Sharing: Qualitative Focus Group Study

Background Sharing patient data can help drive scientific advances and improve patient care, but service users are concerned about how their data are used. When the National Health Service proposes to scrape general practitioner records, it is very important that we understand these concerns in some depth. Objective This study aims to investigate views of mental health service users on acceptable data sharing to provide clear recommendations for future data sharing systems. Methods A total of 4 focus groups with 4 member-checking groups were conducted via the internet between October 2020 and March 2021, with a total of 22 service users in the United Kingdom. Thematic analysis was used to identify the themes. Results Six main themes, with several subthemes were identified, such as the purpose of data sharing—for profit, public good, and continuation of care; discrimination through the misattribution of physical symptoms to mental health conditions (ie, diagnostic overshadowing) alongside the discrimination of individuals or groups within society (ie, institutional discrimination); safeguarding data by preserving anonymity and confidentiality, strengthening security measures, and holding organizations accountable; data accuracy and informed consent—increasing transparency about data use and choice; and incorporating service user involvement in system governance to provide insight and increase security. Conclusions This study extends the limited research on the views and concerns of mental health service users regarding acceptable data sharing. If adopted, the recommendations should improve the confidence of service users in sharing their data. The five recommendations include screening to ensure that data sharing benefits the public, providing service users with information about how their data are shared and what for, highlighting the existing safeguarding procedures, incorporating service user involvement, and developing tailored training for health care professionals to address issues of diagnostic overshadowing and inaccurate health records. Adopting such systems would aid in data sharing for legitimate interests that will benefit patients and the National Health Service.

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Investigating Mental Health Service User Opinions on Clinical Data Sharing: Qualitative Focus Group Study (Preprint)

10.2196/preprints.30596 ◽

2021 ◽

Author(s):

Abimbola Adanijo ◽

Caoimhe McWilliams ◽

Til Wykes ◽

Sagar Jilka

Keyword(s):

Mental Health ◽

National Health Service ◽

Mental Health Service ◽

Health Service ◽

Data Sharing ◽

National Health ◽

Service User ◽

User Involvement ◽

Service Users ◽

Service User Involvement

BACKGROUND Sharing patient data can help drive scientific advances and improve patient care, but service users are concerned about how their data are used. When the National Health Service proposes to scrape general practitioner records, it is very important that we understand these concerns in some depth. OBJECTIVE This study aims to investigate views of mental health service users on acceptable data sharing to provide clear recommendations for future data sharing systems. METHODS A total of 4 focus groups with 4 member-checking groups were conducted via the internet between October 2020 and March 2021, with a total of 22 service users in the United Kingdom. Thematic analysis was used to identify the themes. RESULTS Six main themes, with several subthemes were identified, such as the purpose of data sharing—for profit, public good, and continuation of care; discrimination through the misattribution of physical symptoms to mental health conditions (ie, diagnostic overshadowing) alongside the discrimination of individuals or groups within society (ie, institutional discrimination); safeguarding data by preserving anonymity and confidentiality, strengthening security measures, and holding organizations accountable; data accuracy and informed consent—increasing transparency about data use and choice; and incorporating service user involvement in system governance to provide insight and increase security. CONCLUSIONS This study extends the limited research on the views and concerns of mental health service users regarding acceptable data sharing. If adopted, the recommendations should improve the confidence of service users in sharing their data. The five recommendations include screening to ensure that data sharing benefits the public, providing service users with information about how their data are shared and what for, highlighting the existing safeguarding procedures, incorporating service user involvement, and developing tailored training for health care professionals to address issues of diagnostic overshadowing and inaccurate health records. Adopting such systems would aid in data sharing for legitimate interests that will benefit patients and the National Health Service. CLINICALTRIAL

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Psychiatric drugs: reconsidering their mode of action and the implications for service user involvement

Mental Health Review Journal ◽

10.1108/mhrj-08-2018-0025 ◽

2019 ◽

Vol 24 (1) ◽

pp. 1-10

Author(s):

Marc Roberts

Keyword(s):

Mental Health ◽

Health Care ◽

Mental Health Service ◽

Health Service ◽

Service User ◽

User Involvement ◽

Service Users ◽

Service User Involvement ◽

Content Type ◽

Psychiatric Drugs

Purpose The purpose of this paper is to examine two competing pharmacological models that have been used to understand how psychiatric drugs work: the disease-centred model and the drug-centred model. In addition, it explores the implications of these two models for mental health service users and the degree to which they are meaningfully involved in decisions about the use of psychiatric drugs. Design/methodology/approach The approach is a conceptual review and critical comparison of two pharmacological models used to understand the mode of action of psychiatric drugs. On the basis of this analysis, the paper also provides a critical examination, supported by the available literature, of the implications of these two models for service user involvement in mental health care. Findings The disease-centred model is associated with a tendency to view the use of psychiatric drugs as a technical matter that is to be determined by mental health professionals. In contrast, the drug-centred model emphasises the centrality of the individual experience of taking a psychiatric drug and implies a more equitable relationship between practitioners and mental health service users. Originality/value Although infrequently articulated, assumptions about how psychiatric drugs work have important consequences for service user involvement in mental health care. Critical consideration of these assumptions is an important aspect of seeking to maximise service user involvement in decisions about the use of psychiatric drugs as a response to their experience of mental distress.

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Overcoming challenges in service user involvement in an older people’s mental health service

Mental Health and Social Inclusion ◽

10.1108/mhsi-04-2020-0016 ◽

2020 ◽

Vol 24 (3) ◽

pp. 151-155

Author(s):

Sophie Smith ◽

Maria Abbas ◽

Ariane Zegarra

Keyword(s):

Mental Health ◽

Mental Health Service ◽

Health Service ◽

Service User ◽

User Involvement ◽

Service Improvement ◽

Service Users ◽

Service User Involvement ◽

Content Type ◽

Group Members

Purpose The purpose of this paper is to describe how an older people’s mental health service involves service users in research and service improvement projects, the value of this work and the ways in which barriers to user-led research have been approached and handled. Design/methodology/approach The authors conducted a reflective review of their experiences of running “ResearchNet”, a group aimed at putting service users’ perspectives at the heart of service improvement projects, which benefits from and develops its members’ related skills. The authors explore overcoming barriers to service user involvement in research. Findings This paper identified the following key elements that enabled ResearchNet to overcome barriers which might be found in service user–led research: recruitment processes; identifying research projects; building confidence, sustaining motivation and overcoming setbacks; developing service user’s research skills; keeping multiple views in mind; involving people with dementia; being responsive to group members’ needs; and keeping the group safe. Practical implications Oxleas National Health Service is currently looking at integrating with the quality improvement team to provide further structure and training to group members. Originality/value This paper explores an under-represented area of research – service user inclusion in older adult mental health research and service improvement. It provides much needed clinical implications for clinicians seeking to increase clients’ involvement in research and service development projects.

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