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

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.

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

Wellcome Open Research ◽

10.12688/wellcomeopenres.16166.1 ◽

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.

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

Research Involvement and Engagement ◽

10.1186/s40900-021-00266-1 ◽

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.

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

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph19010291 ◽

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.

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

Wellcome Open Research ◽

10.12688/wellcomeopenres.16166.2 ◽

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

Mental Health Review Journal ◽

10.1108/mhrj-09-2015-0028 ◽

2015 ◽

Vol 20 (4) ◽

pp. 220-231 ◽

Cited By ~ 16

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.

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The development of a national nutrition and mental health research agenda with comparison of priorities among diverse stakeholders

Public Health Nutrition ◽

10.1017/s1368980016002056 ◽

2017 ◽

Vol 20 (4) ◽

pp. 712-725 ◽

Cited By ~ 11

Author(s):

Karen M Davison ◽

Carla D’Andreamatteo ◽

Scott Mitchell ◽

Pat Vanderkooy

Keyword(s):

Mental Health ◽

Lived Experience ◽

Health Research ◽

Research Agenda ◽

Service Providers ◽

Research Priorities ◽

Mental Health Research ◽

Health Condition ◽

Mental Health Condition ◽

Policy Makers

AbstractObjectiveTo develop a national nutrition and mental health research agenda based on the engagement of diverse stakeholders and to assess research priorities by stakeholder groups.DesignA staged, integrated and participatory initiative was implemented to structure a national nutrition and mental health research agenda that included: (i) national stakeholder consultations to prioritize research questions; (ii) a workshop involving national representatives from research, policy and practice to further define priorities; (iii) triangulation of data to formulate the agenda; and (iv) test hypotheses about stakeholder influences on decision making.SettingCanada.SubjectsDiverse stakeholders including researchers, academics, administrators, service providers, policy makers, practitioners, non-profit, industry and funding agency representatives, front-line workers, individuals with lived experience of a mental health condition and those who provide care for them.ResultsThis first-of-its-kind research priority-setting initiative showed points of agreement among diverse stakeholders (n 899) on research priorities aimed at service provision; however, respondents with lived experience of a mental health condition (themselves or a family member) placed emphasis on prevention and mental health promotion-based research. The final integrated agenda identified four research priorities, including programmes and services, service provider roles, the determinants of health and knowledge translation and exchange. These research priorities aim to identify effective models of care, enhance collaboration, inform policy makers and foster knowledge dissemination.ConclusionsSince a predictor of research uptake is the involvement of relevant stakeholders, a sustained and deliberate effort must continue to engage collaboration that will lead to the optimization of nutrition and mental health-related outcomes.

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