Service users as collaborators in mental health research: less stick, more carrot

Staley, Kristina; Kabir, Thomas; Szmukler, George

doi:10.1017/s0033291712001663

Cited by 43 publications

(78 citation statements)

References 10 publications

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“…In the evolving policy climate (NIHR, 2012;Cabinet Office, 2011;House of Commons Health Committee, 2007;INVOLVE, 2007;DH, 2007), it is not overstating the case to say that PPI in research, service evaluation and evaluation of educational initiatives for health and social care staff is fast becoming the norm. It is therefore imperative that both professional researchers and research partners receive appropriate support to acquire or enhance requisite skills (McLaughlin, 2013;Pollard and Evans, 2013;Staley et al, 2013). Moreover, processes for PPI must be developed and streamlined to provide optimum outcomes for both groups; in particular, these processes should not simply be developed by academic or clinical researchers and imposed on service users who wish to be actively involved in health and social care research.…”

Section: Discussionmentioning

confidence: 99%

Developing and evaluating guidelines for patient and public involvement (PPI) in research

Pollard

Donskoy²,

Moule

et al. 2015

International Journal of Health Care Quality Assurance

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Purpose – A growing literature reports the benefits and challenges of patient and public involvement (PPI) in research; nevertheless, understanding PPI in research design remains under-developed. The purpose of this paper is to report learning experiences from involving service users as research partners in two projects that developed and evaluated guidelines for good practice in this regard. The main objective was to evaluate these guidelines. Design/methodology/approach – PPI research guidelines were developed through five workshops involving service users/patients, carers, health and social care professionals/managers and academics. Using a participatory qualitative approach, these guidelines were evaluated through mapping them against the two service user research partners’ experience within another project. Findings – The guidelines were found to be fit for purpose, as they allowed problems to be easily identified and reassurance that required standards were being met. Both academic and service user research partners learned and gained relevant skills. Two service user research partners also found their daily living skills unexpectedly enhanced by project participation. Originality/value – The PPI guidelines, the authors developed were produced by consensus involving several stakeholders. Service users involved as research partners in the project experienced unanticipated personal benefits.

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Section: Discussionmentioning

confidence: 99%

Developing and evaluating guidelines for patient and public involvement (PPI) in research

Pollard

Donskoy²,

Moule

et al. 2015

International Journal of Health Care Quality Assurance

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“…The literature also points to further barriers to coproduction, including the protracted length of time required to complete projects in partnership, and the lack of support by research organizations in terms of funding and incentives (Lawn ; Staley et al . ).…”

Section: Introductionmentioning

confidence: 97%

“…However, uptake of consumer research involvement by nonconsumer researchers (herein referred to as ‘other’ researchers), particularly coproduction (equal partnering of consumer and nonconsumer researchers in research), is thus far ad hoc, sporadic, and often tokenistic (Coney ; Staley et al . ; Wallcraft et al . ), with limited examples in relevant peer‐reviewed literature.…”

Section: Introductionmentioning

confidence: 98%

How did I not see that? Perspectives of nonconsumer mental health researchers on the benefits of collaborative research with consumers

Happell

Gordon

Bocking

et al. 2018

Int J Mental Health Nurs

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Coproduction of research between consumers of mental health services and nonconsumer mental health researchers is increasing. There is some research available describing consumer perspectives of this experience. However, there is a notable lack of research on other (nonconsumer) researcher experiences of and views about consumer involvement in coproduced research. A qualitative exploratory study was undertaken to examine perspectives of mental health researchers about consumer involvement in research. In-depth individual interviews were undertaken with 11 nonconsumer mental health researchers in Australia and New Zealand. Interview transcripts were analysed to identify major themes. There were three interacting themes: the salience of experiential difference, expanded learning, and enhanced research. The dynamic between different perspectives and learning had the effect of enhancing research across the spectrum of study phases and in ensuring research was of value to different groups. The findings emphasize the important contribution consumer researchers can make to mental health research by bringing their unique perspective and enhancing an environment of mutual learning. Findings also point to the need for foregrounding the numerous benefits of joint research between consumer and other researchers to enhance and improve clinical practice and the development of policy.

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“…Tokenistic responses to mandatory requirements are likely as has certainly been the case in the UK (Staley, Kabir, & Szmukler, ); however, tokenism is arguably less likely to occur if a visible ECRG is available that non‐consumer researchers can approach for support. It would be important that the purpose and process of the group is driven by consumer researchers, and ongoing effort be made to minimize tokenism and power imbalances.…”

Section: Discussionmentioning

confidence: 99%

Very useful, but do carefully: Mental health researcher views on establishing a Mental Health Expert Consumer Researcher Group

Scholz

Platania‐Phung

Gordon

et al. 2019

Psychiatric Ment Health Nurs

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Accessible summary What is known on the subject? Contemporary mental health policy stipulates consumer participation in all aspects of mental health services including service evaluation and other forms of mental health research. Research is identified as underpinning quality mental health services, and therefore, consumers researchers could enhance the mental health sector by contributing to the quality, credibility and relevance of mental health research. What this paper adds to existing knowledge? Non‐consumer researchers generally supported the concept of a consumer expert reference group for researchers at the individual and institutional level. A consumer expert reference group should reflect diversity and offer expertise relevant to the topic of research and may represent one way to normalize partnerships with consumer researchers and realize the benefits they can bring to research. What are the implications for practice? Quality mental health services are underpinned by robust research evidence. It is crucial that consumers are active participants in research activity. The availability of a consumer expert reference group could facilitate collaborations between consumer and non‐consumer researchers and contribute to a stronger consumer focus embedded in mental health research. AbstractIntroductionContemporary mental health policy identifies consumers as active participants in all aspects of mental health services from design to evaluation. Consumer researchers should be actively involved in mental health research and contribute to quality service delivery.AimTo gain a snapshot of mental health researcher views on strategies for increasing research by or with consumers in mental health through the establishment of an Expert Consumer Researcher Group (ECRG).MethodsCross‐sectional survey of 41 non‐consumer mental health researchers from Australia or New Zealand.ResultsThe introduction of an ECRG was considered an effective strategy for linking consumer and non‐consumer researchers and providing specialist advice on research design and methodology. The most suitable location for this group was identified as within consumer advocacy agencies (71%), universities (66%) or research funding bodies (66%). Participants rated their likelihood of seeking advice from the ECRG as high.DiscussionResearch participants supported the value of an ECRG. They emphasized the importance of ensuring the group reflected a diversity of views and offered specialized expertise related to the specific topic. The ECRG could benefit both individual researchers and larger research organizations.Implications for practiceAn ECRG could facilitate collaborations with consumer researchers and in turn enhance the quality of mental health research.

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Service users as collaborators in mental health research: less stick, more carrot

Cited by 43 publications

References 10 publications

Developing and evaluating guidelines for patient and public involvement (PPI) in research

Developing and evaluating guidelines for patient and public involvement (PPI) in research

How did I not see that? Perspectives of nonconsumer mental health researchers on the benefits of collaborative research with consumers

Very useful, but do carefully: Mental health researcher views on establishing a Mental Health Expert Consumer Researcher Group

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