The ECOUTER methodology for stakeholder engagement in translational research

Murtagh, Madeleine J.; Minion, Joel; Turner, Andrew; Wilson, Rebecca; Blell, Mwenza; Ochieng, Cynthia; Murtagh, Barnaby; Roberts, Stephanie; Butters, O. W.; Burton, Paul R.

doi:10.1186/s12910-017-0167-z

Cited by 33 publications

(33 citation statements)

References 61 publications

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“…We therefore encourage researchers to build on established accepted typologies and conceptual hierarchies to capture and represent the range of existing co-design approaches and ideally make these more parsimonious. One example of such an approach is the ECOUTER methodology [48].…”

Section: Recommendations For Researchmentioning

confidence: 99%

Research co-design in health: a rapid overview of reviews

Slattery

Saeri

Bragge

2020

Health Res Policy Sys

533

588

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Background: Billions of dollars are lost annually in health research that fails to create meaningful benefits for patients. Engaging in research co-designthe meaningful involvement of end-users in researchmay help address this research waste. This rapid overview of reviews addressed three related questions, namely (1) what approaches to research co-design exist in health settings? (2) What activities do these research co-design approaches involve? (3) What do we know about the effectiveness of existing research co-design approaches? The review focused on the study planning phase of research, defined as the point up to which the research question and study design are finalised. Methods: Reviews of research co-design were systematically identified using a rapid overview of reviews approach (PROSPERO: CRD42019123034). The search strategy encompassed three academic databases, three grey literature databases, and a hand-search of the journal Research Involvement and Engagement. Two reviewers independently conducted the screening and data extraction and resolved disagreements through discussion. Disputes were resolved through discussion with a senior author (PB). One reviewer performed quality assessment. The results were narratively synthesised. Results: A total of 26 records (reporting on 23 reviews) met the inclusion criteria. Reviews varied widely in their application of 'research co-design' and their application contexts, scope and theoretical foci. The research co-design approaches identified involved interactions with end-users outside of study planning, such as recruitment and dissemination. Activities involved in research co-design included focus groups, interviews and surveys. The effectiveness of research co-design has rarely been evaluated empirically or experimentally; however, qualitative exploration has described the positive and negative outcomes associated with co-design. The research provided many recommendations for conducting research co-design, including training participating end-users in research skills, having regular communication between researchers and end-users, setting clear end-user expectations, and assigning set roles to all parties involved in co-design. Conclusions: Research co-design appears to be widely used but seldom described or evaluated in detail. Though it has rarely been tested empirically or experimentally, existing research suggests that it can benefit researchers, practitioners, research processes and research outcomes. Realising the potential of research co-design may require the development of clearer and more consistent terminology, better reporting of the activities involved and better evaluation.

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Section: Recommendations For Researchmentioning

confidence: 99%

Research co-design in health: a rapid overview of reviews

Slattery

Saeri

Bragge

2020

Health Res Policy Sys

533

588

View full text Add to dashboard Cite

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“…The existing evidence on the effects, if any, of public involvement practices on biobanking, or indeed health research in general, is contested and varied. 6,[17][18][19][20] There are cases where public involvement is reported to have improved the accountability or transparency of the biobank or the recruitment and retention of participants. 21 Others have claimed that public involvement makes no difference to research or harms it, providing legitimacy for pre-conceived conclusions.…”

Section: The Impact Of Public Involvement In Biobanksmentioning

confidence: 99%

The reported impact of public involvement in biobanks: A scoping review

Puerta

Kendall

Davies

et al. 2020

Health Expectations

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Background Biobanks increasingly employ public involvement and engagement strategies, though few studies have explored their impact. This review aims to (a) investigate how the impact of public involvement in biobanks is reported and conceptualized by study authors; in order to (b) suggest how the research community might re‐conceptualize the impact of public involvement in biobanks. Methods A systematic literature search of three electronic databases and the INVOLVE Evidence Library in January 2019. Studies commenting on the impact of public involvement in a biobank were included, and a narrative review was conducted. Results and discussion Forty‐one studies covering thirty‐one biobanks were included, with varying degrees of public involvement. Impact was categorized according to where it was seen: ‘the biobank’, ‘people involved’ and ‘the wider research community’. Most studies reported involvement in a ‘functional’ way, in relation to improved rates of participation in the biobank. Broader forms of impact were reported but were vaguely defined and measured. This review highlights a lack of clarity of purpose and varied researcher conceptualizations of involvement. We pose three areas for further research and consideration by biobank researchers and public involvement practitioners. Conclusions Functional approaches to public involvement in biobanking limit impact. This conceptualization of involvement emerges from an entrenched technical understanding that ignores its political nature, complicated by long‐standing disagreement about the values of public involvement. This study urges a re‐imagination of impact, re‐conceptualized as a two‐way learning process. More support will help researchers and members of the public to undergo such reflective exercises.

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“…Increasingly, there is recognition of the importance of stakeholder engagement in HICs in the field of genomic biobanking research [ 21 – 24 ]. It has been referred to as “the process of meaningful involvement of those who are engaged in making decisions about programs” [ 21 ].…”

Section: Discussionmentioning

confidence: 99%

Rules of engagement: perspectives on stakeholder engagement for genomic biobanking research in South Africa

et al. 2018

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BackgroundGenomic biobanking research is undergoing exponential growth in Africa raising a host of legal, ethical and social issues. Given the scientific complexity associated with genomics, there is a growing recognition globally of the importance of science translation and community engagement (CE) for this type of research, as it creates the potential to build relationships, increase trust, improve consent processes and empower local communities. Despite this level of recognition, there is a lack of empirical evidence of the practise and processes for effective CE in genomic biobanking in Africa.MethodsTo begin to address this vacuum, 17 in-depth face to face interviews were conducted with South African experts in genomic biobanking research and CE to provide insight into the process, benefits and challenges of CE in South Africa. Emerging themes were analysed using a contextualised thematic approach.ResultsSeveral themes emerged concerning the conduct of CE in genomic biobanking research in Africa. Although the literature tends to focus on the local community in CE, respondents in this study described three different layers of stakeholder engagement: community level, peer level and high level. Community level engagement includes potential participants, community advisory boards (CAB) and field workers; peer level engagement includes researchers, biobankers and scientists, while high level engagement includes government officials, funders and policy makers. Although education of each stakeholder layer is important, education of the community layer can be most challenging, due to the complexity of the research and educational levels of stakeholders in this layer.ConclusionCE is time-consuming and often requires an interdisciplinary research team approach. However careful planning of the engagement strategy, including an understanding of the differing layers of stakeholder engagement, and the specific educational needs at each layer, can help in the development of a relationship based on trust between the research team and various stakeholder groups. Since the community layer often comprises vulnerable populations in low and middle income countries (LMICs), co-development of innovative educational tools on genomic biobanking is essential. CE is clearly a component of a broader process best described as stakeholder engagement.

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The ECOUTER methodology for stakeholder engagement in translational research

Cited by 33 publications

References 61 publications

Research co-design in health: a rapid overview of reviews

Research co-design in health: a rapid overview of reviews

The reported impact of public involvement in biobanks: A scoping review

Rules of engagement: perspectives on stakeholder engagement for genomic biobanking research in South Africa

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