How to Enhance the Quality of Mental Health Research: Service Users’ Experiences of Their Potential Contributions Through Collaborative Methods

Abstract Background: There is increasing evidence that assessing outcomes in terms of capability wellbeing provides information beyond that of health-related quality of life measures for evaluation in mental health research. This paper aimed to contribute to the utilisation of capability-based measures relative to health status measures in mental health research, by exploring the empirical relationship between the OxCAP-MH, the ICECAP-A, and the EQ-5D instruments against condition-specific measures and each other for schizophrenic patients with depression. Methods: Using trial data for 100 patients from the UK, the properties of the instruments were compared in terms of convergent validity, including correlations between the OxCAP-MH, the ICECAP-A, the EQ-5D-5L descriptive system and the EQ-5D VAS scores; and a line of central tendency between two variables was plotted on locally weighted smoothing curves. Exploratory factor analysis (EFA) investigated the extent to which the instruments measured complementary or overlapping constructs. Responsiveness was assessed in terms of standardised response mean and correlation between change scores (baseline to endpoint) of the instruments. Results: Correlation between the OxCAP-MH and ICECAP-A baseline scores was strong (0.682) and between change scores was moderate (0.401). The baseline scores of both capability instruments correlated more with condition-specific (0.481-0.718) than with generic (0.344-0.425) instruments. Their change scores weakly correlated with change scores of the generic health-related scales (0.183-0.247), but moderately with those of condition-specific instruments (0.339-0.557). The EFA found that while the EQ-5D-5L descriptive system loaded onto one factor, the items of the ICECAP-A loaded onto two additional factors and the items of the OxCAP-MH loaded onto three additional factors. Conclusions: The capability instruments had stronger convergent validity with each other than with any of the other instruments. Assessing outcomes in terms of capabilities for schizophrenic patients with depression proved to capture broader relevant information than the EQ-5D-5L both by the OxCAP-MH and the ICECAP-A, albeit to different extent. When comparing the two capability instruments, the OxCAP-MH tended to have stronger correlations with condition-specific instruments most likely due to its origin from mental health outcome measurement, while the ICECAP-A had slightly stronger correlation with the EQ-5D VAS.

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Correctional Mental Health Research and Program Evaluation

10.1093/med/9780199360574.003.0070 ◽

2015 ◽

Author(s):

Nancy Wolff

Keyword(s):

Mental Health ◽

Mental Illness ◽

Health Research ◽

Mental Health Treatment ◽

Mental Health Research ◽

Psychosocial Treatment ◽

Mental Illnesses ◽

Health Treatment ◽

Correctional Mental Health

Research in mental health issues in prisoner populations essentially stopped in the mid 1970’s. It is now re-emerging as a critical component of improving mental health care and helping toward recovery for the incarcerated mentally ill. Mental illness, ranging from acute anxiety to schizophrenia, is endemic within prisons and jails. Unlike their free world counterparts, however, incarcerated people have a constitutional right to mental health treatment. Yet, despite the need for and right to mental health treatment, remarkably little reliable and valid evidence is available on the nature and level of mental illness among incarcerated people, the effects of incarceration on symptomatology, the availability and quality of medication, cognitive, and psychosocial treatment for disorders, and how context impacts the effectiveness of the treatment that is available. Evidence is absent because corrections-based research is constrained by regulation, financing, and inexperience. In this chapter, the history of prisoner research and the evolution of federal regulations to protect prisoners as human subjects will be reviewed and then discussed in terms of how regulation has impacted correctional mental health research, after first defining what is meant by research and why research is needed to inform policy and practice decisions. This will be followed by recommendations for building the correctional mental health research evidence base. The intent here is to help researchers, in collaboration with stakeholders, develop, design, and implement research studies, and disseminate evidence to advance science and the quality of care available to incarcerated people with mental illnesses within the current regulatory environment.

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Experiences of user involvement in mental health research: exploring reflections from a service user researcher using auto-ethnography

Mental Health Review Journal ◽

10.1108/mhrj-11-2019-0040 ◽

2020 ◽

Vol 25 (3) ◽

pp. 281-294

Author(s):

Joanna Fox

Keyword(s):

Mental Health ◽

Health Research ◽

Service User ◽

Best Practice ◽

User Involvement ◽

Mental Health Research ◽

Power Sharing ◽

Service Users ◽

Content Type ◽

Auto Ethnography

Purpose User involvement in research is entering the mainstream of traditional mental health research. In practice, there are diverse ways in which the process of involvement is experienced by mental health service user researchers. This paper aims to explore two diverse experiences of involvement by the researcher. Design/methodology/approach Auto-ethnography is the research methodology used in this study; it combines a process of reflective writing and critical analysis which enables the author to explore experiences of being both a service user and academic researcher. Two accounts of the author’s involvement in mental health research are presented: one which builds on a consultation model and the other based on co-production principles. Findings Experiences of power-sharing and collaborative decision-making, alongside disempowerment, are discussed, leading to exploration of the theoretical and practical processes for promoting participation of users in research. Research limitations/implications The research is limited because it is undertaken by one individual in a local setting, and is therefore is not generalisable; however, it provides useful insights into the diverse processes of involvement that many service users experience. Practical implications Recommendations are presented to support the involvement of service users in research, with final remarks offered considering the possible future implementation of this still emerging tradition. Originality/value This paper reflects on the experiences of one service user academic involved in research and highlights diverse experiences of both empowering and disempowering involvement, providing recommendations for best practice.

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The use of internet-mediated cross-sectional studies in mental health research

BJPsych Advances ◽

10.1192/apt.bp.114.012948 ◽

2015 ◽

Vol 21 (3) ◽

pp. 175-184 ◽

Cited By ~ 15

Author(s):

Alexandra Pitman ◽

David P. J. Osborn ◽

Michael B. King

Keyword(s):

Mental Health ◽

Health Research ◽

Good Practice ◽

Mental Health Research ◽

Internet Communication ◽

Cross Sectional ◽

Research Findings ◽

Methodological Problems ◽

Use Of Internet

SummaryThis article summarises internet-mediated approaches to conducting quantitative and qualitative cross-sectional mental health research, and describes aspects of research design to consider for optimising scientific rigour and validity as well as response. Rapid adoption of internet-mediated approaches risks compromising the quality of the methods used. Not only can it cause distress to participants, but methodological problems may lead to inappropriate inferences being made from research findings. In this article the advantages of using internet communication for research purposes are balanced against the disadvantages, using examples of recent internet-mediated research (IMR) studies to illustrate good practice.

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Activity and views of service users involved in mental health research: UK survey

The British Journal of Psychiatry ◽

10.1192/bjp.bp.113.128637 ◽

2014 ◽

Vol 205 (1) ◽

pp. 68-75 ◽

Cited By ~ 37

Author(s):

Sue Patterson ◽

Jenny Trite ◽

Tim Weaver

Keyword(s):

Mental Health ◽

Health Research ◽

Service User ◽

Service Use ◽

Mental Health Research ◽

Service Improvement ◽

Service Users ◽

User Research ◽

Research Workforce ◽

Service User Research

BackgroundOptimisation of the process and outcomes of service user involvement in research is dependent on understanding current practice, challenges and opportunities.AimsTo describe activities, roles and experiences of service users involved in mental health research.MethodNational cross-sectional online questionnaire survey, using snowball sampling. Descriptive statistics and framework analysis undertaken collaboratively with a service user reference group.ResultsThe survey revealed a previously undescribed, highly qualified service user research workforce. Positioned within and alongside mainstream research, respondents reported drawing on extensive service use, and passion for service improvement to challenge perceived clinical academic dominance of research. The support of peers was crucial to involvement, which typically enhanced mental health but for some, pervasive stigma and scrutiny undermined self-confidence and practical difficulties challenged equitable participation.ConclusionsRecognition of the service user research workforce will support the constructive amalgamation of academic and experiential expertise needed to shape and realise investment in mental health research.

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Use of Machine Learning and Artificial Intelligence Methods in Geriatric Mental Health Research Involving Electronic Health Record or Administrative Claims Data: A Systematic Review

Frontiers in Psychiatry ◽

10.3389/fpsyt.2021.738466 ◽

2021 ◽

Vol 12 ◽

Author(s):

Mohammad Chowdhury ◽

Eddie Gasca Cervantes ◽

Wai-Yip Chan ◽

Dallas P. Seitz

Keyword(s):

Mental Health ◽

Artificial Intelligence ◽

Machine Learning ◽

Systematic Review ◽

Health Research ◽

Mental Health Research ◽

Risk Of Bias ◽

Geriatric Mental Health ◽

Electronic Health

Introduction: Electronic health records (EHR) and administrative healthcare data (AHD) are frequently used in geriatric mental health research to answer various health research questions. However, there is an increasing amount and complexity of data available that may lend itself to alternative analytic approaches using machine learning (ML) or artificial intelligence (AI) methods. We performed a systematic review of the current application of ML or AI approaches to the analysis of EHR and AHD in geriatric mental health.Methods: We searched MEDLINE, Embase, and PsycINFO to identify potential studies. We included all articles that used ML or AI methods on topics related to geriatric mental health utilizing EHR or AHD data. We assessed study quality either by Prediction model Risk OF Bias ASsessment Tool (PROBAST) or Quality Assessment of Diagnostic Accuracy Studies (QUADAS-2) checklist.Results: We initially identified 391 articles through an electronic database and reference search, and 21 articles met inclusion criteria. Among the selected studies, EHR was the most used data type, and the datasets were mainly structured. A variety of ML and AI methods were used, with prediction or classification being the main application of ML or AI with the random forest as the most common ML technique. Dementia was the most common mental health condition observed. The relative advantages of ML or AI techniques compared to biostatistical methods were generally not assessed. Only in three studies, low risk of bias (ROB) was observed according to all the PROBAST domains but in none according to QUADAS-2 domains. The quality of study reporting could be further improved.Conclusion: There are currently relatively few studies using ML and AI in geriatric mental health research using EHR and AHD methods, although this field is expanding. Aside from dementia, there are few studies of other geriatric mental health conditions. The lack of consistent information in the selected studies precludes precise comparisons between them. Improving the quality of reporting of ML and AI work in the future would help improve research in the field. Other courses of improvement include using common data models to collect/organize data, and common datasets for ML model validation.

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Consensus Development of Priority Outcome Domains for Community Mental Health Cares by Multiple Stakeholders: Protocol for an Online Delphi Study in Japan

10.21203/rs.3.rs-669682/v1 ◽

2021 ◽

Author(s):

Takuma Shiozawa ◽

Sosei Yamaguchi ◽

Makoto Ogawa ◽

Makiko Abe ◽

Takayuki Kawaguchi ◽

...

Keyword(s):

Mental Health ◽

Mental Illness ◽

Community Mental Health ◽

Health Research ◽

Mental Health Research ◽

Clinical Aspects ◽

Treatment Goals ◽

Service Users ◽

Multiple Stakeholders ◽

Number Of Patients

Abstract BackgroundThe number of patients with mental illness living in the community has been increasing in Japan. Treatment goals for mental illness have expanded from hospital discharge and improved functioning to employment, living alone, and personal realization. These changes in treatment goals have also influenced mental health research. Recent studies have addressed the development of core outcome sets focusing on clinical aspects of mental illness such as depression and anxiety. However, a well-developed framework of essential outcomes for people with mental illness (service users) who live in the community is lacking. In addition, recent worldwide trends suggest more patient and public involvement (PPI) and the importance of considering multiple stakeholders’ views in the area of mental health research. Purpose of this study to explore consensus on high-priority outcome domains among multiple stakeholders such as service users, caregivers, service providers, governmental staff, and researchers in community mental health care and relevant fields in Japan. MethodsA three-step approach to developing an outcome list will be used. First, we will develop a long list of outcomes relevant to stakeholders through a literature review of outcomes reported in existing systematic reviews and randomized controlled trials, focus group interviews with key stakeholders, and two online questionnaire surveys of service users and caregivers. Second, the long list will be checked and revised in a two rounds of pilot study. Third, the long list will be shortened to the outcome list through the Delphi methodology with participation from multiple stakeholders. Three rounds of Delphi survey will be conducted and consensus reached if at least 70% of the participants considered at ‘very important’ or ‘important’. Outcome items that were indeterminate will be taken to the next round. All responses of survey will be feedback to participants in the next round.DiscussionIdentifying important common outcome domains through collaboration among service users, caregivers, and other stakeholders appears to contribute to the development of evidence for community mental health research in Japan. In addition, the study process itself may help promote PPI in education, practice, and research in the field of community mental health.

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A novel application of the Lego® Serious Play® methodology in mental health research: Understanding service users' experiences of the 0‐19 mental health model in the United Kingdom

Early Intervention in Psychiatry ◽

10.1111/eip.13223 ◽

2021 ◽

Author(s):

Frane Vusio ◽

Andrew Thompson ◽

Max Birchwood

Keyword(s):

Mental Health ◽

United Kingdom ◽

Health Research ◽

Mental Health Research ◽

Service Users ◽

The United Kingdom ◽

Health Model

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Do alternative capability instruments capture differing aspects of mental health and quality of life in comparison to the EQ-5D for schizophrenic patients with depression?

10.21203/rs.3.rs-44326/v3 ◽

2021 ◽

Author(s):

Timea Mariann Helter ◽

Joanna Coast ◽

Agata Łaszewska ◽

Tanja Stamm ◽

Judit Simon

Keyword(s):

Quality Of Life ◽

Mental Health ◽

Health Research ◽

Convergent Validity ◽

Mental Health Research ◽

Change Scores ◽

Health Related ◽

Schizophrenic Patients ◽

Eq Vas

Abstract Background There is increasing evidence that assessing outcomes in terms of capability wellbeing provides information beyond that of health-related quality of life measures for evaluation in mental health research. This paper aimed to contribute to the utilisation of capability-based measures relative to health status measures in mental health research, by exploring the empirical relationship between the OxCAP-MH, the ICECAP-A, and the EQ-5D instruments against condition-specific measures and each other for schizophrenic patients with depression.Methods Using trial data for 100 patients from the UK, the properties of the instruments were compared in terms of convergent validity, including correlations between the OxCAP-MH, the ICECAP-A, the EQ-5D-5L and the EQ VAS scores; and a line of central tendency between two variables was plotted on locally weighted smoothing curves. Exploratory factor analysis (EFA) investigated the extent to which the instruments measured complementary or overlapping constructs. Responsiveness was assessed in terms of standardised response mean and correlation between change scores (baseline to endpoint) of the instruments. Results Correlation between the OxCAP-MH and ICECAP-A baseline scores was strong (0.677) and between change scores was moderate (0.388). The baseline scores of both capability instruments correlated more with condition-specific (0.481-0.718) than with generic (0.354-0.431) instruments. Change scores of the capability instruments weakly correlated with change scores of the generic health-related scales (0.131-0.269), but moderately with those of condition-specific instruments for the ICECAP-A (0.355-0.451) and moderately/strongly for the OxCAP-MH (0.437-0.557). The EFA found that while the EQ-5D-5L loaded onto one factor, the items of the ICECAP-A loaded onto two additional factors and the items of the OxCAP-MH loaded onto three additional factors. Conclusions The capability instruments had stronger convergent validity with each other than with any of the other instruments. Assessing outcomes in terms of capabilities for schizophrenic patients with depression proved to capture broader relevant information than the EQ-5D-5L both by the OxCAP-MH and the ICECAP-A, albeit to different extents. When comparing the two capability instruments, the OxCAP-MH tended to have stronger correlations with condition-specific instruments most likely due to its origin from mental health outcome measurement, while the ICECAP-A had slightly stronger correlation with the EQ VAS. These capability measures provide a viable option for measuring outcome for economic evaluations of severe mental health conditions, and we would recommend the inclusion of OxCAP-MH and/or ICECAP-A alongside generic instruments such as the EQ-5D so that further evidence can be obtained.

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