Stakeholder engagement in policy development: challenges and opportunities for human genomics

Lemke, Amy A.; Harris-Wai, Julie

doi:10.1038/gim.2015.8

Cited by 100 publications

(108 citation statements)

References 37 publications

Supporting

Mentioning

106

Contrasting

Unclassified

Order By: Relevance

“…Engagement may help identify areas of agreement and disagreement and provide ways to understand the drivers behind differences. It may help to articulate the values of the most affected communities and align policy recommendations with their expectations (Lemke and Harris-Way, 2015). Further, citizens have recently become more involved in the research effort itself through do-it-yourself science and other bottom-up approaches (Nascimento et al 2014;Martin 2017).…”

mentioning

confidence: 99%

Knowledge management for policy impact: the case of the European Commission’s Joint Research Centre

et al. 2018

View full text Add to dashboard Cite

The European Commission's Joint Research Centre (JRC) employs over 2000 scientists and seeks to maximise the value and impact of research in the EU policy process. To that end, its Knowledge management for policy (KMP) initiative synthesised the insights of a large amount of interdisciplinary work on the 'evidence-policy interface' to promote a new skills and training agenda. It developed this training initially for Commission staff, but many of its insights are relevant to organisations which try to combine research, policymaking, management, and communication skills to improve the value and use of research in policy. We recommend that such organisations should develop teams of researchers, policymakers, and 'knowledge brokers' to produce eight key practices: (1) research synthesis, to generate 'state of the art' knowledge on a policy problem; (2) management of expert communities, to maximise collaboration; (3) understanding policymaking, to know when and how to present evidence; (4) interpersonal skills, to focus on relationships and interaction; (5) engagement, to include citizens and stakeholders; (6) effective communication of knowledge; (7) monitoring and evaluation, to identify the impact of evidence on policy; and (8) policy advice, to know how to present knowledge effectively and ethically. No one possesses all skills relevant to all these practices. Rather, we recommend that organisations at the evidence-policy interface produce teams of people with different backgrounds, perspectives, and complementary skills.

show abstract

mentioning

confidence: 99%

Knowledge management for policy impact: the case of the European Commission’s Joint Research Centre

et al. 2018

View full text Add to dashboard Cite

show abstract

“…Their engagement can range from merely taking consent, to educational activities or explicitly democratizing knowledge production processes [8]. Yet, detailed methods, frameworks and outcomes of such engagements for policy development are rarely published [10].…”

Section: Introductionmentioning

confidence: 99%

Situating trade-offs: Stakeholder perspectives on overtreatment versus missed diagnosis in transition to Xpert MTB/RIF Ultra in Kenya and Swaziland

et al. 2020

View full text Add to dashboard Cite

Implementing new diagnostics in public health programs can involve difficult trade-off decisions between individual patient benefits and public health considerations. Such decisionmaking processes are often not documented and may not include engagement of affected communities. This paper examines the perspectives of stakeholders on the trade-off between over-treatment and missed diagnosis captured during decision-making workshops on the transition from use of Xpert MTB/RIF to diagnose tuberculosis to Xpert MTB/RIF Ultra in Kenya and Swaziland. Xpert MTB/RIF Ultra has an overall increase in sensitivity but a decrease in specificity when compared to its predecessor. We conducted a qualitative study using four focus group discussions with a total of 47 participants and non-participant observation. The analysis reveals how participants deemed Xpert MTB/RIF Ultra's reduced specificity vis-à-vis its increased sensitivity to be an acceptable trade-off. The way participants assessed this trade-off was shaped by their experiences with the general uncertainty of all diagnostic tests, alternative testing options, historical evolution of diagnostic practices, epidemiological factors and resource constraints. In assessing the trade-off community and individual benefit and harm was frequently discussed together. Qualitative research on stakeholder engagement activities for diagnostic development and implementation can identify everyday experiences and situate assessments and perspectives of key stakeholders and as such aid in decision-making, improving implementation as well as patient outcomes. Further research is needed on the intended and unintended consequences of such engagement activities, how findings are being incorporated by decision-makers, and the impact on programmatic implementation.

show abstract

“…Several reports have been published with an emphasis on the need to use the strategic collaborative engagement of all stakeholders across multiple sectors, including patients, family members, patient advocates, and community leaders, to move implementation science forward. While the majority of reports recognize the need to place the patient and family at the center of genomic medicine implementation, they only provide recommendations, but not actionable plans for building implementation science frameworks [Burton, Adams, Bunton, & Schroder‐Back, 2009; Lemke & Harris‐Wai, 2015; Roberts, Mensah, & Khoury, 2019].…”

Section: Introductionmentioning

confidence: 99%

The AutGO Initiative: A Conceptual Framework for Developing Genetics‐Outcomes Research Hypotheses

Talebizadeh

Shah

2020

Autism Research

View full text Add to dashboard Cite

The increasing emphasis on translational approaches to complex neuropsychiatric and neurodevelopmental conditions research requires scientists from a broad range of disciplines to build dynamic collaborations when formulating hypotheses and framing study designs. The need to integrate the knowledge and perspectives not only from multiple scientific silos but also from the populations impacted by these conditions presents a significant challenge to researchers, particularly for a heterogeneous condition like autism. As one path toward addressing these challenges, we have previously introduced Autism Genetics Outcomes (AutGO), an initiative to support broad stakeholder partnerships and promote a new integrated concept called GO (i.e., research approaches that draw on both genetics and clinical outcomes perspectives). Herein, we developed a workflow for collecting stakeholders' feedback toward the development of a GO hypothesis. AutGO is an evolving initiative, and here we describe how its three essential components (conceptual framework, applicability, and implementation) have been developed. As a proof‐of‐concept, the AutGO team sought to demonstrate how a GO hypothesis could be developed using a semi‐structured literature review workflow. We also developed a prototype from published reports and formulated a GO hypothesis for autism. Rather than seeking community stakeholder input after a research project is conceptualized and designed, the developed conceptual framework demonstrates the feasibility of formulating scientific hypotheses by engaging stakeholders in retrospective semi‐structured literature reviews. The presented workflow, prototype, and discussed recommendations will bring awareness in the autism research community about the benefits of applying the GO approach in order to promote translational aspects in genetics research. Lay Summary We used a community‐based engagement approach to develop AutGO (Autism Genetics Outcomes), an initiative to establish stakeholder partnerships and to promote research approaches (we refer to as GO) that draw on both genetics and clinical outcomes perspectives. Specifically, we developed a conceptual framework that includes a literature review process for developing GO hypotheses and stakeholder feedback collection protocol. Our work will bring awareness in the autism research community about the benefits of integrating patient perspectives in genetics research. Autism Res 2020, 13: 1286–1299. © 2020 The Authors. Autism Research published by International Society for Autism Research published by Wiley Periodicals LLC.

show abstract

Stakeholder engagement in policy development: challenges and opportunities for human genomics

Cited by 100 publications

References 37 publications

Knowledge management for policy impact: the case of the European Commission’s Joint Research Centre

Knowledge management for policy impact: the case of the European Commission’s Joint Research Centre

Situating trade-offs: Stakeholder perspectives on overtreatment versus missed diagnosis in transition to Xpert MTB/RIF Ultra in Kenya and Swaziland

The AutGO Initiative: A Conceptual Framework for Developing Genetics‐Outcomes Research Hypotheses

Contact Info

Product

Resources

About