scholarly journals Best practice framework for Patient and Public Involvement (PPI) in collaborative data analysis of qualitative mental health research: methodology development and refinement

2018 ◽  
Vol 18 (1) ◽  
Author(s):  
Helen Jennings ◽  
Mike Slade ◽  
Peter Bates ◽  
Emma Munday ◽  
Rebecca Toney
Keyword(s):  
Mental Health ◽  
Data Analysis ◽  
Health Research ◽  
Best Practice ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Mental Health Research ◽  
Methodology Development ◽  
Practice Framework ◽  
Collaborative Data Analysis

scholarly journals Patient and Public Involvement in Youth Mental Health Research: Protocol for a Systematic Review of Practices and Impact

2021 ◽  
Vol 12 ◽  
Author(s):  
Célia M. D. Sales ◽  
Filipa Martins ◽  
Marisa M. Alves ◽  
Sara Carletto ◽  
Sonia Conejo-Cerón ◽  
...  
Keyword(s):  
Mental Health ◽  
Young People ◽  
Systematic Reviews ◽  
Health Research ◽  
Public Involvement ◽  
Relevant Information ◽  
Patient And Public Involvement ◽  
Mental Health Research ◽  
Children And Young People ◽  
Meta Analyses

Various health settings have advocated for involving patients and members of the public (PPI) in research as a means to increase quality and relevance of the produced knowledge. However, youth PPI has been an understudied area. This protocol paper describes a new project that aims to summarize what is known about PPI with young people in mental health research. In line with the Preferred Reporting Items for Systematic reviews and Meta-Analyses Statement guidelines we will identify and appraise suitable articles and extract and synthesize relevant information including at least two reviewers at each stage of the process. Results will be presented in two systematic reviews that will describe (a) how youth PPI has been conducted (Review1) and (b) what impact youth PPI had on the subsequent research and on stakeholders (Review2). To our knowledge, this is the first set of reviews that uses a critical appraisal tool, which is co-developed with children and young people. Findings from this project will provide valuable insights and set out the key steps to adopting adequate PPI methods when involving children and young people in mental health research.

Reconciling stakeholder interests in the era of open data

2018 ◽  
Vol 82 (3) ◽  
pp. 253-259
Author(s):  
Alessandro S. De Nadai
Keyword(s):  
Mental Health ◽  
Data Analysis ◽  
Data Sharing ◽  
Health Research ◽  
Open Data ◽  
Secondary Data ◽  
Mental Health Research ◽  
Secondary Data Analysis ◽  
Stakeholder Interests ◽  
Funding Agencies

While there is great enthusiasm about new data sharing initiatives in mental health research, some concerns have recently been expressed that reflect tension between those who generate data and those who engage in secondary data analysis. While many aspects of data sharing have been considered, some of this tension has not been fully addressed. If this tension continues to go unresolved, enthusiasm for data sharing initiatives may be hindered. The author suggests solutions to these issues after carefully considering respective stakeholder interests (including those of patients, researchers, and funding agencies).

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

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.

Standards and Guidelines for the Development of Diagnostic Nomenclatures and Alternatives in Mental Health Research and Practice

2018 ◽  
Vol 59 (3) ◽  
pp. 401-427 ◽  
Author(s):  
Sarah R. Kamens ◽  
Lisa Cosgrove ◽  
Shannon M. Peters ◽  
Nev Jones ◽  
Elizabeth Flanagan ◽  
...  
Keyword(s):  
Mental Health ◽  
Mental Health Professionals ◽  
Health Professionals ◽  
Health Research ◽  
Paradigm Shift ◽  
Best Practice ◽  
Mental Health Research ◽  
Research And Practice ◽  
Alternative Systems ◽  
Standards And Guidelines

Diagnostic nomenclatures have been central to mental health research and practice since the turn of the 20th century. In recent years, an increasing number of mental health professionals have proposed that a paradigm shift in diagnosis is inevitable. The Standards and Guidelines for the Development of Diagnostic Nomenclatures and Alternatives in Mental Health Research and Practice are intended to serve as a reference for the development of scientifically sound and ethically principled diagnostic nomenclatures and descriptive alternatives. The Standards and Guidelines are divided into four sections that address the purposes; development; type, content, and structure; and scientific grounding of nomenclatures and alternative systems. They are intended to represent best practice in the classification and description of emotional distress for multidisciplinary mental health professionals.

scholarly journals Pharmaceutical industry, academia and people with experience of mental illness as partners in research: a need for ethical guidance

2021 ◽  
Vol 5 ◽  
pp. 196
Author(s):  
Sapfo Lignou ◽  
Ilina Singh
Keyword(s):  
Mental Health ◽  
Mental Illness ◽  
Lived Experience ◽  
Health Research ◽  
Best Practice ◽  
Mental Health Research ◽  
Research Institutions ◽  
Research Partnerships ◽  
Moral Framework ◽  
Ethical Guidance

Background: Several social and policy developments have led to research partnerships in mental health research, which depart from traditional research models. One form of such partnerships is among Research institutions, Industry (pharmaceutical and biotech) and People with lived experience of mental illness (RIPs) in the NIHR services. There are several benefits but also challenges in such partnerships. An ethics-based approach to anticipating and addressing such problems is lacking. Given the expansion of RIPs in treatment development for mental health illness, guidance to support ethical and effective collaborations in NIHR-funded mental health research is essential. Methods: To develop a moral framework for evaluating the ethics of RIPs, we systematically searched PubMed for peer-reviewed literature discussing good practices in research partnerships. Searches were also conducted in websites of known organizations supporting patient engagement with industry in mental health research and in the references of short-listed articles. Following application of exclusion criteria, remaining articles were critically examined and summarised to synthesise principles for ethical RIPs and inform clear guidance and practices. Results: Critical analysis and synthesis of the short-listed articles highlighted the need for two sets of principles to guide ethical RIPs: principles for (a) RIPs as a trustworthy enterprise and (b) fair RIPs. We discuss the application of these principles in problem-solving strategies that can support best practice in establishing fair and effective research partnerships among research institutions, industry and people with lived experience of mental illness in the NIHR services. Conclusions: Ethical guidance is needed to prevent and address challenges in RIPs and to promote the scientific and social benefits of these new research partnership models in mental health research in the NIHR services. We show how the proposed moral framework can guide research partners in designing, sustaining and assessing ethical and effective mental health research collaborations.

scholarly journals Co-development of a best practice checklist for mental health data science: A Delphi study

2021 ◽  
Author(s):  
E.J. Kirkham ◽  
C.J. Crompton ◽  
M.H. Iveson ◽  
I. Beange ◽  
A. McIntosh ◽  
...  
Keyword(s):  
Mental Health ◽  
Mental Illness ◽  
Health Research ◽  
Delphi Study ◽  
Best Practice ◽  
Data Science ◽  
Mental Health Research ◽  
Health Data ◽  
The Future ◽  
Three Phases

AbstractBackgroundMental health research is commonly affected by difficulties in recruiting and retaining participants, resulting in findings which are based on a sub-sample of those actually living with mental illness. Increasing the use of Big Data for mental health research, especially routinely-collected data, could improve this situation. However, steps to facilitate this must be enacted in collaboration with those who would provide the data - people with mental health conditions.MethodsWe used the Delphi method to create a best practice checklist for mental health data science. Twenty participants with both expertise in data science and personal experience of mental illness worked together over three phases. In the Phase 1, participants rated a list of 63 statements and added any statements or topics that were missing. Statements receiving a mean score of 5 or more (out of 7) were retained. These were then combined with the results of a rapid thematic analysis of participants’ comments to produce a 14-item draft checklist, with each item split into two components: best practice now and best practice in the future. In Phase 2, participants indicated whether or not each item should remain in the checklist, and items that scored more than 50% endorsement were retained. In Phase 3 participants rated their satisfaction with the final checklist.ResultsThe final checklist was made up of 14 “best practice” items, with each item covering best practice now and best practice in the future. At the end of the three phases, 85% of participants were (very) satisfied with the two best practice checklists, with no participants expressing dissatisfaction.ConclusionsIncreased stakeholder involvement is essential at every stage of mental health data science. The checklist produced through this work represents the views of people with experience of mental illness, and it is hoped that it will be used to facilitate trustworthy and innovative research which is inclusive of a wider range of individuals.

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