Creating positive experiences of involvement in mental health research

Richmond, Laura; Caton, Neil Robert; Downs, James; Newton, Alice; Devereux-Fitzgerald, Angela; Brooks, Helen

doi:10.1016/s2215-0366(22)00430-8

Cited by 10 publications

(7 citation statements)

References 14 publications

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“…Not only does this active engagement and involvement result in research that is more relevant and useful for users, but it also meets the essential rights of users to be included in the development of interventions that will affect their lives and those closest to them [ 49 ]. However, even when users have been included, there is often a lack of true representation of diverse populations [ 50 ], resulting in digital solutions that do not provide sufficient options for different individual preferences and life circumstances.…”

Section: Resultsmentioning

confidence: 99%

“…Participants with lived experience and academic experts do not always “speak the same language” [ 136 ], so awareness of differences in expression and the need to work together to solve health problems is necessary to minimize the impact of power imbalances and promote coproduction [ 137 ]. This can be achieved by developing safe spaces to create and share knowledge [ 138 ] and allow for opportunities for researchers and participants with lived experience to learn and enrich their own expertise from the experience of informed participation and collaboration [ 49 ]. This improved communication could provide the platform to create new models of care to deliver digital services, which will also require adjustments to organizational structure, policies, and membership.…”

Section: Discussionmentioning

confidence: 99%

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Digital Mental Health for Schizophrenia and Other Severe Mental Illnesses: An International Consensus on Current Challenges and Potential Solutions

Smith,

Hardy,

Vinnikova

et al. 2024

JMIR Ment Health

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Background Digital approaches may be helpful in augmenting care to address unmet mental health needs, particularly for schizophrenia and severe mental illness (SMI). Objective An international multidisciplinary group was convened to reach a consensus on the challenges and potential solutions regarding collecting data, delivering treatment, and the ethical challenges in digital mental health approaches for schizophrenia and SMI. Methods The consensus development panel method was used, with an in-person meeting of 2 groups: the expert group and the panel. Membership was multidisciplinary including those with lived experience, with equal participation at all stages and coproduction of the consensus outputs and summary. Relevant literature was shared in advance of the meeting, and a systematic search of the recent literature on digital mental health interventions for schizophrenia and psychosis was completed to ensure that the panel was informed before the meeting with the expert group. Results Four broad areas of challenge and proposed solutions were identified: (1) user involvement for real coproduction; (2) new approaches to methodology in digital mental health, including agreed standards, data sharing, measuring harms, prevention strategies, and mechanistic research; (3) regulation and funding issues; and (4) implementation in real-world settings (including multidisciplinary collaboration, training, augmenting existing service provision, and social and population-focused approaches). Examples are provided with more detail on human-centered research design, lived experience perspectives, and biomedical ethics in digital mental health approaches for SMI. Conclusions The group agreed by consensus on a number of recommendations: (1) a new and improved approach to digital mental health research (with agreed reporting standards, data sharing, and shared protocols), (2) equal emphasis on social and population research as well as biological and psychological approaches, (3) meaningful collaborations across varied disciplines that have previously not worked closely together, (4) increased focus on the business model and product with planning and new funding structures across the whole development pathway, (5) increased focus and reporting on ethical issues and potential harms, and (6) organizational changes to allow for true communication and coproduction with those with lived experience of SMI. This study approach, combining an international expert meeting with patient and public involvement and engagement throughout the process, consensus methodology, discussion, and publication, is a helpful way to identify directions for future research and clinical implementation in rapidly evolving areas and can be combined with measurements of real-world clinical impact over time. Similar initiatives will be helpful in other areas of digital mental health and similarly fast-evolving fields to focus research and organizational change and effect improved real-world clinical implementation.

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Section: Resultsmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Digital Mental Health for Schizophrenia and Other Severe Mental Illnesses: An International Consensus on Current Challenges and Potential Solutions

Smith,

Hardy,

Vinnikova

et al. 2024

JMIR Ment Health

View full text Add to dashboard Cite

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“…I find myself having a connection with academia through the writing of articles and through my lectures. So now, what I have experienced and what I want to share, matters to others (Richmond et al , 2023).…”

Section: In Search Of Perma-related Traits Of Importance For Remissio...mentioning

confidence: 99%

“…So now, what I have experienced and what I want to share, matters to others(Richmond et al, 2023).As a practitioner in mental health, I have delivered training and lectures on "My lived experience" over a number of years. For a while my format has been to ask students what they think made a difference to my life and put me on a pathway to recovery from mental health issues.…”

mentioning

confidence: 99%

“Not so good vibrations”: five collaborative autoethnographic accounts of Brian Wilson, his life, music, rock “n” recovery’

Hopkinson,

Niklasson,

Bryngelsson

et al. 2023

MHSI

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Purpose The purpose of this paper is to provide an analysis of the life of the musician Brian Wilson from five different perspectives. Design/methodology/approach The authors used a mixed method of collaborative autoethnography, psychobiography and digital team ethnography to try and better understand the life and contributions of Brian Wilson. Findings Each of the five contributors provides different insights into the life and music of Brian Wilson. Research limitations/implications While the focus of this paper is on a single individual, a case study, the long and distinguished life of Brian Wilson provides much material for discussion and theorising. Practical implications Each individual presenting to mental health services has a complex biography. The five different contributions articulated in this paper could perhaps be taken as similar to the range of professional opinions seen in mental health teams, with each focusing on unique but overlapping aspects of the person’s story. Social implications This account shows the importance of taking a biological-psychological-social-spiritual and cultural perspective on mental illness. Originality/value This multi-layered analysis brings a range of perspectives to bear on the life and achievements of Brian Wilson, from developmental, musical, psychological and lived experience standpoints.

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“…There has been a pleasing growth in patient and public involvement (PPI) in research, though sometimes there is a lingering sense that we might not be doing it as well as we might like. Writing in Lancet Psychiatry , Richmond et al, 4 who as a group have various lived experiences of mental illness, reflect on what makes a good, constructive experience. This clearly matters.…”

mentioning

confidence: 99%