What Do We Know About Sharing Power in Co-Production in Mental Health Research? A Systematic Review and Thematic Synthesis.

BACKGROUND: Guidance on co-production between researchers and people with lived experience was published in 2018 by the National Institute for Health and Care Research (NIHR) advisory group, previously known as INVOLVE. This guidance described sharing power as a key principle within co-production. Authentic sharing of power within co-produced mental health research does not always occur however and remains a challenge to achieve within many projects. OBJECTIVES: To explore what has been learned about the sharing of power in co-production within mental health research since the publication of these guidelines, by synthesising qualitative literature relating to power within co-produced mental health research. METHODS: We carried out a systematic review with thematic synthesis. We searched CINHAL, Embase and PubMed databases to identify qualitative or mixed-method studies relating to power within co-produced mental health research. Studies were independently screened by two reviewers for inclusion and appraised using the Critical Appraisal Skills Programme tool (CASP) for qualitative research. RESULTS: We identified nine papers that met the criteria for inclusion and were included in the synthesis. Three themes were generated: (1) Battling to share power against a more powerful system, (2) Empowerment through relationships and (3) The journey is turbulent, but it is not supposed to be smooth. CONCLUSIONS: Results highlight that power is pervasive, especially within the hierarchical systems research is often conducted within. Sharing power within co-produced mental health research is an ongoing complex process that is not intended to be easy. Respectful trusting relationships can help facilitate power sharing. However, ultimately meaningful change needs to come from research funders, universities and NHS providers. PATIENT OR PUBLIC CONTRIBUTION: The study authors include a lived experience researcher who contributed to the review design, analysis and write-up.

Understanding and Defining Young People's Involvement and Under-Representation in Mental Health Research: A Delphi Study.

INTRODUCTION: The mental health of young people (aged 16-25 years) is a growing public health concern in the United Kingdom due to the increasing numbers of young people experiencing mental health difficulties, with many not in contact with mental health services. To design services that meet the needs of all young people, a diversity of young people must be involved in mental health research, beyond being participants. This Delphi study aimed to identify different types of 'involvement' and to define and describe 'under-representation' in young people's involvement in mental health research. METHODS: Twenty-seven experts in young people's mental health research completed a series of online questionnaires. The experts were academic researchers, patient and public involvement (PPI) professionals and young 'experts by experience'. Round 1 generated panellists' views on 'involvement' and 'under-representation'. Round 2 summarised panellists' responses from Round 1 and sought consensus (minimum 70% agreement) in nine question areas. Round 3 validated the findings of the previous rounds. RESULTS: Consensus was achieved in eight out of nine areas, resulting in a matrix (with definitions) of the different types of young people's involvement in mental health research, from being advisors to involvement ambassadors. The findings generated an agreed-upon definition of under-representation, an identification of when in the research process there is under-representation and the characteristics of the young people who are under-represented. Experts further agreed on demographic data that should be collected to improve reporting on involvement. CONCLUSIONS: This study adds to our understanding of involvement and under-representation in the context of young people's mental health research through expert consensus. It provides a practical resource for researchers considering involving young people in the research process and suggests the data that should be collected to improve reporting on the diversity of the young people involved. PATIENT AND PUBLIC CONTRIBUTION: A research oversight group of five young people advised on this study. They contributed throughout the project-from endorsing the research question to commenting on the findings and dissemination. Two of the group reviewed all participant materials and piloted the initial questionnaire.

Lost in translation: a narrative review and synthesis of the published international literature on mental health research and translation priorities (2011-2023).

BACKGROUND: Priority setting in mental health research is arguably lost in translation. Decades of effort has led to persistent repetition in what the research priorities of people with lived-experience of mental ill-health are. AIM: This was a narrative review and synthesis of published literature reporting mental health research priorities (2011-2023). METHODS: A narrative framework was established with the questions: (1) who has been involved in priority setting? With whom have priorities been set? Which priorities have been established and for whom? What progress has been made? And, whose priorities are being progressed? RESULTS: Seven papers were identified. Two were Australian, one Welsh, one English, one was from Chile and another Brazilian and one reported on a European exercise across 28 countries (ROAMER). Hundreds of priorities were listed in all exercises. Prioritisation mostly occured from survey rankings and/or workshops (using dots, or post-it note voting). Most were dominated by clinicians, academics and government rather than people with lived-experience of mental ill-health and carer, family and kinship group members. CONCLUSION: One lived-experience research led survey was identified. Few studies reported lived-experience design and development involvement. Five of the seven papers reported responses, but no further progress on priorities being met was reported.

This review followed PRISMA guidance for search strategy development and systematic review and reporting. This was not a systematic review with or without meta-analysis and the method did not fit for registration with PROSPERO.

Systematic Review: Patient and Public Involvement of Children and Young People in Mental Health Research.

OBJECTIVE: Patient and public involvement (PPI) is an essential ethical component in mental health research, and represents a major opportunity to improve translational mental health research. The goals of this review were to (1) provide a comprehensive overview of empirical research focusing on PPI of children and young people (CYP) in mental health research studies; (2) evaluate the results with CYP and parents of those affected; and (3) derive recommendations for PPI of CYP in future mental health research studies. METHODS: Based on an extensive literature review following the PRISMA guidelines, studies including CYP (age range: 0-21 years) in mental health research were identified and examined along a two-part analysis process considering their usability for mental health research. The conclusions drawn from the studies concerning CYP involvement were summarized and recommendations derived. RESULTS: Overall, 19 articles reported PPI of CYP (age range: 10-26 years) in mental health research and were included for further analyses. The integrated studies differed in the type of PPI, and in the way the participation and involvement processes were presented. CONCLUSION: Progress has been made in engaging CYP in mental health research, but there is a need for international standards, operationalization, and evaluation measures. Future research should go beyond merely reporting the PPI process itself. It should clearly indicate how and to what extent feedback from these PPI members was incorporated throughout the research process.

The Role of the National Institute of Mental Health in Promoting Diversity in the Psychiatric Research Workforce.

The mission of the National Institute of Mental Health (NIMH) is to transform the understanding and treatment of mental illnesses through basic and clinical research, paving the way for prevention, recovery, and cure. This mission can only be realized if full participation in the research enterprise is open to all. Nevertheless, systemic racism and other barriers remain significant obstacles to achieving a diverse workforce. To address these barriers, NIMH must ensure a just and equitable funding process, support diversity-focused training opportunities, and encourage research into mental health disparities and other areas of interest to a diverse array of scientists.

A co-design living labs philosophy of practice for end-to-end research design to translation with people with lived-experience of mental ill-health and carer/family and kinship groups.

There is increased recognition that people with lived-experience of mental ill-health ought to be centred in research design, implementation and translation, and quality improvement and program evaluation of services. There is also an increased focus on ways to ensure that co-design processes can be led by people with lived-experience of mental ill-health. Despite this, there remains limited explanation of the physical, social, human, and economic infrastructure needed to create and sustain such models in research and service settings. This is particularly pertinent for all health service sectors (across mental and physical health and social services) but more so across tertiary education settings where research generation occurs for implementation and translation activities with policy and services. The Co-Design Living Labs program was established in 2017 as an example of a community-based embedded approach to bring people living with trauma and mental ill-health and carers/family and kinship group members together with university-based researchers to drive end-to-end research design to translation in mental healthcare and research sectors. The program's current membership is near to 2000 people. This study traces the evolution of the program in the context of the living labs tradition of open innovation. It overviews the philosophy of practice for working with people with lived-experience and carer/family and kinship group members-togetherness by design. Togetherness by design centres on an ethical relation of being-for that moves beyond unethical and transactional approaches of being-aside and being-with, as articulated by sociologist Zygmunt Bauman. The retrospective outlines how an initial researcher-driven model can evolve and transform to become one where people with lived-experience of mental ill-health and carer/family kinship group members hold clear decision-making roles, share in power to enact change, and move into co-researcher roles within research teams. Eight mechanisms are presented in the context of an explanatory theoretical model of change for co-design and coproduction, which are used to frame research co-design activities and provide space for continuous learning and evolution of the Co-Design Living Labs program.

Methodological procedures for priority setting mental health research: a systematic review summarising the methods, designs and frameworks involved with priority setting.

BACKGROUND: Research priority setting aims to identify research gaps within particular health fields. Given the global burden of mental illness and underfunding of mental health research compared to other health topics, knowledge of methodological procedures may raise the quality of priority setting to identify research with value and impact. However, to date there has been no comprehensive review on the approaches adopted with priority setting projects that identify mental health research, despite viewed as essential knowledge to address research gaps. Hence, the paper presents a summary of the methods, designs, and existing frameworks that can be adopted for prioritising mental health research to inform future prioritising projects. METHOD: A systematic review of electronic databases located prioritisation literature, while a critical interpretive synthesis was adopted whereby the appraisal of methodological procedures was integrated into the synthesis of the findings. The synthesis was shaped using the good practice checklist for priority setting by Viergever and colleagues drawing on their following categories to identify and appraise methodological procedures: (1) Comprehensive Approach-frameworks/designs guiding the entire priority setting; (2) Inclusiveness -participation methods to aid the equal contribution of stakeholders; (3) Information Gathering-data collecting methods to identify research gaps, and (4) Deciding Priorities-methods to finalise priorities. RESULTS: In total 903 papers were located with 889 papers removed as either duplicates or not meeting the inclusion and exclusion criteria. 14 papers were identified, describing 13 separate priority setting projects. Participatory approaches were the dominant method adopted but existing prioritisation frameworks were modified with little explanation regarding the rationale, processes for adaptation and theoretical foundation. Processes were predominately researcher led, although with some patient involvement. Surveys and consensus building methods gathered information while ranking systems and thematic analysis tend to generate finalised priorities. However, limited evidence found about transforming priorities into actual research projects and few described plans for implementation to promote translation into user-informed research. CONCLUSION: Prioritisation projects may benefit from justifying the methodological approaches taken to identify mental health research, stating reasons for adapting frameworks alongside reasons for adopting particular methods, while finalised priorities should be worded in such a way as to facilitate their easy translation into research projects.

An overview of clustering methods with guidelines for application in mental health research.

Cluster analyzes have been widely used in mental health research to decompose inter-individual heterogeneity by identifying more homogeneous subgroups of individuals. However, despite advances in new algorithms and increasing popularity, there is little guidance on model choice, analytical framework and reporting requirements. In this paper, we aimed to address this gap by introducing the philosophy, design, advantages/disadvantages and implementation of major algorithms that are particularly relevant in mental health research. Extensions of basic models, such as kernel methods, deep learning, semi-supervised clustering, and clustering ensembles are subsequently introduced. How to choose algorithms to address common issues as well as methods for pre-clustering data processing, clustering evaluation and validation are then discussed. Importantly, we also provide general guidance on clustering workflow and reporting requirements. To facilitate the implementation of different algorithms, we provide information on R functions and libraries.

Stakeholders' perspectives on the development of an Africa-focused postgraduate diploma to address public mental health training needs in Africa: a qualitative study.

BACKGROUND: Despite the significant contribution of mental health conditions to the burden of disease, there is insufficient evidence from Africa to inform policy, planning and service delivery. Thus, there is a need for mental health research capacity building, led by African public mental health researchers and practitioners, to drive local research priorities. The aim of African mental health Researchers Inspired and Equipped (ARISE) was to develop a one-year postgraduate diploma (PGDip) in public mental health to address the current gaps in public mental health training. METHODS: Thirty-six individual interviews were conducted online with three groups of participants: course convenors of related PGDips in South Africa, course convenors of international public mental health degree programmes and stakeholders active in public mental health in Africa. The interviewers elicited information regarding: programme delivery, training needs in African public mental health, and experiences of facilitators, barriers and solutions to successful implementation. The transcribed interviews were analysed by two coders using thematic analysis. RESULTS: Participants found the Africa-focused PGDip programme acceptable with the potential to address public mental health research and operational capacity gaps in Africa. Participants provided several recommendations for the PGDip, including that: (i) the programme be guided by the principles of human rights, social justice, diversity and inclusivity; (ii) the content reflect African public mental health needs; (iii) PGDip faculty be skilled in teaching and developing material for online courses and (iv) the PGDip be designed as a fully online or blended learning programme in collaboration with learning designers. CONCLUSIONS: The study findings provided valuable insight into how to communicate key principles and skills suited to the rapidly developing public mental health field while keeping pace with changes in higher education. The information elicited has informed curriculum design, implementation and quality improvement strategies for the new postgraduate public mental health programme.

Amplifying the voices of young people from Black, Asian and other minority ethnic backgrounds in mental health research.

A commentary on the Mental Health Research Goals paper, emphasising the importance of the involvement of young people at all stages of mental health research pertaining to their demographic. Examples are highlighted from the UKRI Emerging Minds Network's research challenge on the impact of racism on young people's mental health in the UK, which has implications for research on racism and youth mental health specifically but also mental health research generally.

Global child and adolescent mental health perspectives: bringing change locally, while thinking globally.

Child and adolescent mental health (CAMH) are a global priority. Different countries across the globe face unique challenges in CAMH services that are specific to them. However, there are multiple issues that are also similar across countries. These issues have been presented in this commentary from the lens of early career CAMH professionals who are alumni of the Donald J Cohen Fellowship program of the IACAPAP. We also present recommendations that can be implemented locally, namely, how promoting mental health and development of children and adolescents can result in better awareness and interventions, the need to improve quality of care and access to care, use of technology to advance research and practices in CAMH, and how investing in research can secure and support CAMH professionals and benefit children and adolescents across the globe. As we continue to navigate significant uncertainty due to dynamic circumstances globally, bolstering collaborations by "bringing change locally, while thinking globally" are invaluable to advancing global CAMH research, clinical service provision, and advancement of the field.

Centering equity and lived experience: implementing a community-based research grant on cannabis and mental health.

BACKGROUND: Mental health research in Canada is not only underfunded but there remains an inequitable distribution of funding to address unmet needs especially in clinical and applied research. In 2018, the legalization of cannabis for non-medical use in Canada sparked the need to examine the relationship between cannabis use and mental health. The federal government allocated $10 M over 5 years to the Mental Health Commission of Canada (MHCC), a pan-Canadian health organization funded at arm's length by the federal government. METHODS: In 2020, the MHCC implemented an innovative community-based research (CBR) program to investigate this relationship among priority populations including people who use cannabis and live with mental illness, First Nations, Inuit and Métis, two-spirit, lesbian, gay, bisexual, trans and/or queer (2SLGBTQ+) individuals, and racialized populations. Extensive consultations, a scoping review and an environmental scan set the research agenda. Key program components included a review committee with representation from diverse priority populations, extensive proposal-writing support for applicants, and capacity bridging workshops for the 14 funded projects. RESULTS: Of the 14 funded research projects, 6 focus on and are led by Indigenous communities, 5 focus on other equity-seeking populations, and 9 explore the perceived patterns, influence and effects of use including benefits and harms. Lessons learned include the importance of a health equity lens and diverse sources of knowledge setting the CBR research agenda. In addition to capacity bridging that promote equitable roles among knowledge co-producers as well as the critical role of organizational support in increasing research productivity, especially in the area of mental health and cannabis use where there is a need for more applied research. CONCLUSION: Centering equity and lived and living experience strengthened the rationale for investments and ensured user-led evidence generation and utilization - a key public health gain. Organizational support for proposal development and capacity bridging yields significant value that can be replicated in future CBR initiatives.

The Role of the National Institute of Mental Health in Promoting Diversity in the Psychiatric Research Workforce.

The mission of the National Institute of Mental Health (NIMH) is to transform the understanding and treatment of mental illnesses through basic and clinical research, paving the way for prevention, recovery, and cure. This mission can only be realized if full participation in the research enterprise is open to all. Nevertheless, systemic racism and other barriers remain significant obstacles to achieving a diverse workforce. To address these barriers, NIMH must ensure a just and equitable funding process, support diversity-focused training opportunities, and encourage research into mental health disparities and other areas of interest to a diverse array of scientists.

Nothing about Us without Us: Inclusion and IRB Review of Mental Health Research Protocols.

Research on mental health and illness presents a variety of unique ethical challenges. This article argues that institutional review boards (IRBs) can improve their reviews of such research by including the perspectives of individuals with the condition under study either as members of the IRB or as consultants thereto. Several reasons for including the perspectives of these individuals are advanced, with the discussion organized around a hypothetical case study involving the assessment of a novel talk-therapy modality. Having made this case, the article goes on to explain how to implement the idea by building on a recent proposal by Rebecca Dresser, who argues in a number of publications for the inclusion of former research participants in the IRB review process. Finally, concerns about protecting reviewer and consultant confidentiality are addressed.

Improving Recruitment for Mental Health Research in Muslim American Women : Research Recruitment in Muslim American Women.

This study determines the methods for improving recruitment of Muslim American women in mental health research. Studying this minority population in more depth will reduce their suffering from mental illness. A 40-item survey, along with cover letter, was hosted on the Stanford University website and sent via email to organizations known to have large Muslim American women populations. Although approximately 200-300 responses were hoped for, an unexpected total of 1279 women completed the survey within days. The effectiveness of this survey was attributed to multiple factors: ease of an online survey, privacy afforded through an anonymous survey, trust in the PI, the survey being hosted by a reputable university and understanding the importance of mental health research. It is important to continue improving methods to recruit the minority Muslim American women population for studies.

Use of the French national health insurance information system for research in the field of mental health: Systematic review and perspectives.

PURPOSE: This systematic review registered in PROSPERO (CRD42021225296) aimed to describe the use of the French national health insurance information system, which covers the entire French population (67 million inhabitants), for research in the field of mental health. METHODS: Three electronic databases and a journal hand-search identified 15 265 articles from January 1, 2003 (year of creation of the database) to October 31, 2020. Studies of any design were eligible for inclusion provided that they (i) made use of at least one component of the French health insurance database and (ii) focused on a topic in near and far connection with the field of mental health in France. Database used, design and methods, study period, population, key findings, and type of use for medical research were described. RESULTS: A total of 152 studies were included in the review analysis. There was an increase in the number of published articles over time throughout the studied period. Studies focusing on adults (n = 139) largely outnumbered those focusing on children and adolescents (n = 11). Pharmacoepidemiological studies were by far the most frequent (n = 123), followed by methodological studies (n = 23), epidemiological studies (n = 17), and health economics studies (n = 3). The most studied psychotropic drugs were antidepressants (n = 27), anxiolytics (n = 27), and opioids (n = 25) while fewer studies focused on methylphenidate (n = 6) and on mood stabilizers (n = 5). Few studies specifically focused on psychiatric disorders, mainly depression (n = 4), suicide (n = 4), and psychotic disorders (n = 3). CONCLUSION: This systematic review highlighted a relatively poor exploitation of the Système national des données de santé database in the field of psychiatric research with regard to the great possibilities it offers, with a clear lag in certain fields such as epidemiological or health economics studies and in specific populations, in particular children and adolescents.

The utility of self-perceived health ratings in screening volunteers for mental health research.

We report on the utility of online self-perceived medical and mental health ratings (SPH) when screening healthy volunteers for mental health research. These one-item ratings were correlated with eligibility decisions and longer clinical surveys. We found correlations between SPH ratings and blinded clinician ratings of volunteer medical and mental health after an in-person evaluation, although additional analysis revealed poor reliability between clinician and volunteer ratings. SPH ratings are a useful addition to screening methods for research studies.

Video-augmentation of the informed consent process in mental health research: An exploratory study from India.

Only around 50-75% of individuals fully understand the various aspects of informed consent in research. The aim of our study was to examine whether supplementing the conventional paper-based informed consent process with an audiovisual aid improves participants' understanding of the informed consent process and the information conveyed to them. Participants from two mental health/substance use intervention development studies were recruited for this study through consecutive sampling. They were then administered the traditional paper information and consenting process by itself or in combination with a video depicting the procedures of the study. Subsequently a bespoke questionnaire was administered to assess the participants' understanding of the information conveyed to them about the parent study. The various domains of the questionnaire were compared between those who were administered the two different consenting processes using the chi square test. 27 (58.7%) participants were administered the traditional consenting process and 19 were administered the video-supplemented consenting process. The video-supplemented consenting process was not superior to the traditional paper-based informed consent process on any of the domains examined. In settings with participants having a limited education, and in research involving people with mental health or substance use problems, further research is necessary to identify contextually relevant best practices for the informed consent process.

A bibliometric analysis of international publications and citation trends of articles in mental health produced by Chinese institutions in mainland China (1990-2019).

BACKGROUND: The recognition of the importance of mental health as a health-target to be pursued at a global level has received additional theoretical legitimacy through its inclusion in the United Nations (UN) 2030 Agenda for Sustainable development. The theoretical axiom - mental health as a development priority - is today expected to drive the focus of research efforts and orient the future policies and funds expenditures, at global and local level. According to these premises, it becomes central to track the international trajectories of mental health research and how the different countries are progressively defining their role in the global mental health effort. In this paper we have focused on China. In light of heavy burden of mental and substance use disorders affecting this country, and considering the impact of this burden at a global level, a basic research was conducted with the main aim of offering a preliminary view on the Chinese scientific activity within the context of global mental health research. This study is not intended to assess the quality of Chinese research, but merely to retrieve and measure a specific output of this research: the articles in mental-health produced by Chinese institutions based in mainland China, published in international journals. Although the publication of articles in internationally indexed journals in not exhaustive of China's scientific activity in global mental health, it is nevertheless informative of the production of new knowledge, it allows an assessment of the impact of this knowledge at the global scientific community level and it could partially reflect the Chinese capacity to benefit from research conducted globally. OBJECTIVE: In consideration of the very limited number of studies assessing the collective evidence of Chinese research in mental health, we developed our analysis with the purpose of providing a preliminary picture of the Chinese contribution, in terms of scientific publications, in this field of knowledge. Our research performs a bibliometric analysis on the articles in mental-health produced by Chinese institutions based in mainland China and published in English-language SCI-E and SSCI journals from 1990 to 2019, providing a measure of the impact of this research at the global scientific community level. METHODS: We performed a search on the Web of Science (WoS) using seven mental and substance use disorders according to their global prevalence, as per estimates of the Global Burden of Disease 2019. A dataset including the overall number of publications for seven diseases was created and exported in InCites. The dataset was analysed on the basis of 11 research areas (WoS categories) to which mental health topic is associated in SCI-E and SSCI journals in WoS. We further extracted publications that originated in mainland China. The citational trends over time are calculated with nonparametric test for trends across ordered groups. An evaluation of the impact of the Chinese scientific production is provided by the number of citations received at the global scientific community level, both as average and percentile. RESULTS: From 1990 to 2020 the overall Chinese scientific production in mental health has been generally increasing, reaching the highest growth in the last decade. A statistically significant increase (p < 0.001) is reported for articles produced by Chinese institutions in mainland China regarding 'depression*', 'bipolar disorders*' and 'schizophrenia*'. Published Chinese research is mostly included in SCI-E journals. There is a substantial overlap regarding the average number of citations for articles in mental-health produced by Chinese institutions and the rest of the world. Despite the increasing trend, the percentage of articles in mental health produced by Chinese institutions in mainland China on the overall scientific production worldwide is below 10%. CONCLUSION: Notwithstanding a substantial increase in the last decade, the volume of Chinese publications appears to be very limited, thus resulting in a relatively low impact at a global level. These results are affecting the potential contribution of Chinese research in the global mental health effort.