Co-production in mental health research: reflections from the People Study

2015 ◽  
Vol 20 (4) ◽  
pp. 220-231 ◽  
Author(s):  
Vanessa Pinfold ◽  
Paulina Szymczynska ◽  
Sarah Hamilton ◽  
Richard Peacocke ◽  
Shirley Dean ◽  
...  
Keyword(s):  
Mental Health ◽  
Lived Experience ◽  
Health Research ◽  
Empirical Studies ◽  
Theoretical Work ◽  
Mental Health Research ◽  
Primary Objective ◽  
Lessons Learned ◽  
Advisory Panel ◽  
Content Type

Purpose – The purpose of this paper is to reflect on the process of co-producing mental health research where work was shared between university academics, charity-based researchers and a Lived Experience Advisory Panel. Design/methodology/approach – The authors express the opinions of a research team made up of people with experience of using mental health services, being carers and being academically trained researchers from a range of health and social science disciplines. Some had experience in several areas. The paper is co-produced to provide collective reflection and recommendations. Findings – Co-production of research is not well documented in published literature. The authors believe there is scope to develop co-production approaches, but further conceptual and theoretical work is needed alongside empirical studies. A socially situated complex research project, possibly involving multi-stakeholder groups, demands flexibility in approach. Similarly to user-controlled and other emancipatory methodologies, co-production makes the democratisation of research a primary objective in order to produce better quality and more relevant studies. Co-production also addresses inequalities in power and control within research projects; this way of working does provide a healthy challenge to traditional research hierarchies. Practical implications – Lessons learned should be honestly shared to develop co-production research methods. Projects need to have a strategy for how to value different contributions and facilitate constructive relationships if discord emerges. Establishing clear project roles, expectations and process for payment are essential in developing genuine collaborative partnerships. Originality/value – It is a viewpoint paper.

Valuing the voice of lived experience of eating disorders in the research process: Benefits and considerations

2021 ◽  
pp. 000486742199879
Author(s):  
Selma Musić ◽  
Rosiel Elwyn ◽  
Grace Fountas ◽  
Inge Gnatt ◽  
Zoe M Jenkins ◽  
...  
Keyword(s):  
Mental Health ◽  
Eating Disorders ◽  
Eating Disorder ◽  
Lived Experience ◽  
Health Research ◽  
Research Process ◽  
Mental Health Research ◽  
Direct Involvement ◽  
The Voice ◽  
Process Benefits

Although the inclusion of individuals with lived experience is encouraged within the research process, there remains inconsistent direct involvement in many mental health fields. Within the eating disorders field specifically, there is a very strong and increasing presence of lived experience advocacy. However, due to a number of potential challenges, research undertaken in consultation or in collaboration with individuals with lived experience of an eating disorder is scarce. This paper describes the significant benefits of the inclusion of individuals with lived experience in research. The specific challenges and barriers faced in eating disorders research are also outlined. It is concluded that in addition to existing guidelines on working with lived experience collaborators in mental health research, more specific procedures are required when working with those with eating disorders.

More than just characters in a story: effective and meaningful involvement of young people in mental health research

2019 ◽  
Vol 18 (1) ◽  
pp. 14-16 ◽  
Author(s):  
Niamh MacSweeney ◽  
Sarah Bowman ◽  
Clare Kelly
Keyword(s):  
Mental Health ◽  
Young People ◽  
Health Research ◽  
Youth Mental Health ◽  
Mental Health Research ◽  
Content Type ◽  
The Public ◽  
Advisory Groups ◽  
Meaningful Involvement ◽  
Youth Involvement

Purpose The story of youth mental health remains poorly understood. To truly progress our understanding of youth mental health, we must shift our focus from one in which young people are the subjects, or “characters”, of research efforts to one in which they are active agents, or “authors”. This change in dynamic falls under the banner of public and patient involvement (PPI), a growing movement that emphasises the meaningful involvement of the public in health research. The paper aims to discuss these issues. Design/methodology/approach Here, the authors aim to stimulate this shift in focus by describing emerging practices of youth involvement in paediatric research and outlining how such practices can be extended to the domain of youth mental health. In particular, the authors highlight Young Persons’ Advisory Groups (YPAG), through which young people can be involved in an active, meaningful and mutually beneficial manner, at each step in the research life cycle. Findings A YPAG comprises young people who act as research partners, providing guidance on a range of activities. In the health domain, YPAGs have provided fresh perspectives, generated valuable knowledge and changed attitudes about youth involvement in research. Moreover, they provide young people with genuine opportunities to shape research so that it addresses issues they encounter in their everyday lives. Originality/value The establishment of youth mental health YPAGs will enhance the authors’ research questions, design, delivery and impact. The authors outline how researchers can embrace PPI and work together with young people to tell a different story of youth mental health.

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

2020 ◽  
Vol 5 ◽  
pp. 196
Author(s):  
Sapfo Lignou ◽  
Ilina Singh
Keyword(s):  
Mental Health ◽  
Mental Illness ◽  
Lived Experience ◽  
Health Research ◽  
Mental Health Research ◽  
Research Projects ◽  
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). There are several benefits but also ethical challenges in RIPs. An ethics-based approach to anticipating and addressing such ethical issues in mental health research is lacking. Given the expansion of RIPs in treatment development for mental health illness, guidance to support ethical and trustworthy collaborative mental health research projects 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 ethically acceptable 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 (e.g. public accountability, transparency) and (b) fair RIPs (e.g. effective governance, respect). We discuss the application of these principles in problem-solving strategies that can support best practice in establishing fair and successful mental health research partnerships among research institutions, industry and people with lived experience of mental illness. 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. We show how the proposed moral framework can guide research partners in designing, sustaining and assessing ethical and trustworthy collaborative mental health research projects.

scholarly journals Patient oriented research in mental health: matching laboratory to life and beyond in Canada

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Jenessa N. Johnston ◽  
Lisa Ridgway ◽  
Sarah Cary-Barnard ◽  
Josh Allen ◽  
Carla L. Sanchez-Lafuente ◽  
...  
Keyword(s):  
Mental Health ◽  
Clinical Research ◽  
Lived Experience ◽  
Health Research ◽  
Mental Health Research ◽  
Great Utility ◽  
The Future ◽  
Primary Investigator ◽  
Oriented Research

AbstractAs patient-oriented research gains popularity in clinical research, the lack of patient input in foundational science grows more evident. Research has shown great utility in active partnerships between patient partners and scientists, yet many researchers are still hesitant about listening to the voices of those with lived experience guide and shape their experiments. Mental health has been a leading area for patient movements such as survivor-led research, however the stigma experienced by these patients creates difficulties not present in other health disciplines. The emergence of COVID-19 has also created unique circumstances that need to be addressed. Through this lens, we have taken experiences from our patient partners, students, and primary investigator to create recommendations for the better facilitation of patient-oriented research in foundational science in Canada. With these guidelines, from initial recruitment and leading to sustaining meaningful partnerships, we hope to encourage other researchers that patient-oriented research is necessary for the future of mental health research and foundational science.

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.

scholarly journals Virtual World Café Method for Identifying Mental Health Research Priorities: Methodological Case Study

2021 ◽  
Vol 19 (1) ◽  
pp. 291
Author(s):  
Michelle Banfield ◽  
Amelia Gulliver ◽  
Alyssa R. Morse
Keyword(s):  
Mental Health ◽  
Lived Experience ◽  
Health Research ◽  
Virtual World ◽  
Mental Health Problems ◽  
Research Priorities ◽  
Research Process ◽  
Mental Health Research ◽  
Target Number ◽  
Single Room

People with lived experience of mental health problems as both consumers and carers can bring significant expertise to the research process. However, the methods used to gather this information and their subsequent results can vary markedly. This paper describes the methods for two virtual World Cafés held to gather data on consumer and carer priorities for mental health research. Several methodological processes and challenges arose during data collection, including the achieved recruitment for each group (n = 4, n = 7) falling significantly short of the target number of 20 participants per group. This led to departures from planned methods (i.e., the use of a single ‘room’, rather than multiple breakout rooms). Despite this, the participants in the virtual World Cafés were able to generate over 200 ideas for research priorities, but not identify agreed-upon priorities. Virtual World Cafés can quickly generate a significant volume of data; however, they may not be as effective at generating consensus.

Field Research: A Graduate Student's Guide

2021 ◽  
Author(s):  
Ezgi Irgil ◽  
Anne-Kathrin Kreft ◽  
Myunghee Lee ◽  
Charmaine N Willis ◽  
Kelebogile Zvobgo
Keyword(s):  
Mental Health ◽  
Graduate Students ◽  
Health Research ◽  
Field Research ◽  
Mental Health Research ◽  
Crisis Response ◽  
Lessons Learned ◽  
Early Career ◽  
Sampling Strategies ◽  
Early Career Researchers

Abstract What is field research? Is it just for qualitative scholars? Must it be done in a foreign country? How much time in the field is “enough”? A lack of disciplinary consensus on what constitutes “field research” or “fieldwork” has left graduate students in political science underinformed and thus underequipped to leverage site-intensive research to address issues of interest and urgency across the subfields. Uneven training in Ph.D. programs has also left early-career researchers underprepared for the logistics of fieldwork, from developing networks and effective sampling strategies to building respondents’ trust, and related issues of funding, physical safety, mental health, research ethics, and crisis response. Based on the experience of five junior scholars, this paper offers answers to questions that graduate students puzzle over, often without the benefit of others’ “lessons learned.” This practical guide engages theory and praxis, in support of an epistemologically and methodologically pluralistic discipline.

The Social and Emotional Impact of Involving Individuals With Mental Illness in the Research Process

2019 ◽  
Vol 29 (11) ◽  
pp. 1634-1640 ◽  
Author(s):  
Aliza Werner-Seidler ◽  
Frances Shaw
Keyword(s):  
Mental Health ◽  
Mental Illness ◽  
Lived Experience ◽  
Qualitative Interviews ◽  
Research Process ◽  
Mental Health Research ◽  
Advisory Panel ◽  
Emotional Impact ◽  
Social And Emotional ◽  
The Social

There is a need to involve individuals with a lived experience in health and medical research. Some organizations have developed mechanisms to seek the input of people with a lived experience. However, there are few examples of qualitative research into the impacts of participation. In this study, we investigate the social and emotional impact of participation on individuals, as well as the perceived impact on the organization, in an advisory panel at an Australian mental health research institute. In-depth qualitative interviews were conducted with 50% of the participants on the panel to understand how they conceptualized their involvement. Participants became invested in the organization and their role within it, and found it personally valuable to access diverse perspectives and discuss mental health outside a treatment context. These findings suggest that participating in the research process is beneficial to individuals with a lived experience of mental illness.

scholarly journals Lived experience researchers partnering with consumers and carers to improve mental health research: Reflections from an Australian initiative

2018 ◽  
Vol 27 (4) ◽  
pp. 1219-1229 ◽  
Author(s):  
Michelle Banfield ◽  
Rebecca Randall ◽  
Mearon O'Brien ◽  
Sophie Hope ◽  
Amelia Gulliver ◽  
...  
Keyword(s):  
Mental Health ◽  
Lived Experience ◽  
Health Research ◽  
Mental Health Research

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.

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