P91 From randomised to realist: how a PPIE collaboration with under-served communities has transformed future research on liver disease inequalities. Results from the NIHR liver disease partnerships ‘Champions’ collaboration

<h3>Introduction</h3> The use of peers with lived experience of being from under-served populations has shown promise at engaging underserved patients with HCC surveillance. Little is known about the contexts in which peers operate, the mechanisms underlying their effect and the broader impacts they have including wider generalisability across healthcare systems. To better understand these phenomena, research that includes underserved groups is needed. <h3>Methods</h3> To design an evaluation of peer support in liver care pathways we have worked with our PPIE team. We have built relationships with people from under-served populations and inclusion health groups across five geographically varied, deprived coastal sites in England (Portsmouth, Hull, Newcastle, Southampton, Isle of Wight). We asked people to share their lived experience of liver healthcare and we have listened. Engagement activities included liver awareness and scanning events, meeting with key stakeholders from local support services, workshops to explore key issues with people with lived experience, as well as those giving/receiving peer support. We mapped our findings to a Context-Mechanism-Outcome framework, to help inform an Initial Programme Theory. <h3>Results</h3> Contributors told us that a randomised trial design of a peer support evaluation would be unacceptable to them. Having lost trust in services, if they were not offered peer support in a trial this would feel ‘like another kick in the teeth’. They also told us they would be happy to be involved in research, but this needs to be in collaboration with them, not done ‘to them’. Our contributors conveyed barriers to access to conventional care pathways including stigma and mistrust; mechanisms of the potential effect of peers such as consistency, advocacy and shared experience; and a myriad of potential effects including changes in outlook, support seeking and productivity. These results are summarised in the figure 1 below as an initial programme theory. <h3>Discussion</h3> Our partnership work has enabled us to build a strong and ongoing relationship with people traditionally considered ‘hard to reach’. Our findings have fundamentally changed our future study design. A positivist approach such as a Cluster RCT would be unacceptable and would miss key complexities in the mechanism and potential impact of peer support. To robustly explore these phenomena, we will conduct a realist evaluation co-designed with people with lived experience. A realist approach is an established method to understand complex interventions.

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Publication Details

Published
2024-10-01
DOI
https://doi.org/10.1136/gutjnl-2024-basl.96
Citations
1
Primary Topic
Liver Disease Diagnosis and Treatment
Type
article
Field-Weighted Citation Impact
0.39
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article

P91 From randomised to realist: how a PPIE collaboration with under-served communities has transformed future research on liver disease inequalities. Results from the NIHR liver disease partnerships ‘Champions’ collaboration

Ryan Buchanan, Julie Parkes, Amy Jane O'Donnell, Kate Glyn‐Owen et al.
1 citations
Liver Disease Diagnosis and Treatment
0.39
article

P91 From randomised to realist: how a PPIE collaboration with under-served communities has transformed future research on liver disease inequalities. Results from the NIHR liver disease partnerships ‘Champions’ collaboration

Ryan Buchanan, Julie Parkes, Amy Jane O'Donnell, Kate Glyn‐Owen, Heather A. Parsons
article en
1 citations

Abstract

<h3>Introduction</h3> The use of peers with lived experience of being from under-served populations has shown promise at engaging underserved patients with HCC surveillance. Little is known about the contexts in which peers operate, the mechanisms underlying their effect and the broader impacts they have including wider generalisability across healthcare systems. To better understand these phenomena, research that includes underserved groups is needed. <h3>Methods</h3> To design an evaluation of peer support in liver care pathways we have worked with our PPIE team. We have built relationships with people from under-served populations and inclusion health groups across five geographically varied, deprived coastal sites in England (Portsmouth, Hull, Newcastle, Southampton, Isle of Wight). We asked people to share their lived experience of liver healthcare and we have listened. Engagement activities included liver awareness and scanning events, meeting with key stakeholders from local support services, workshops to explore key issues with people with lived experience, as well as those giving/receiving peer support. We mapped our findings to a Context-Mechanism-Outcome framework, to help inform an Initial Programme Theory. <h3>Results</h3> Contributors told us that a randomised trial design of a peer support evaluation would be unacceptable to them. Having lost trust in services, if they were not offered peer support in a trial this would feel ‘like another kick in the teeth’. They also told us they would be happy to be involved in research, but this needs to be in collaboration with them, not done ‘to them’. Our contributors conveyed barriers to access to conventional care pathways including stigma and mistrust; mechanisms of the potential effect of peers such as consistency, advocacy and shared experience; and a myriad of potential effects including changes in outlook, support seeking and productivity. These results are summarised in the figure 1 below as an initial programme theory. <h3>Discussion</h3> Our partnership work has enabled us to build a strong and ongoing relationship with people traditionally considered ‘hard to reach’. Our findings have fundamentally changed our future study design. A positivist approach such as a Cluster RCT would be unacceptable and would miss key complexities in the mechanism and potential impact of peer support. To robustly explore these phenomena, we will conduct a realist evaluation co-designed with people with lived experience. A realist approach is an established method to understand complex interventions.

University Hospital Southampton NHS Foundation Trust (GB), University of Southampton (GB), Newcastle University (GB)
Openalex Percentile: Top 33%
Liver Disease Diagnosis and Treatment
0.39
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