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

@article{Lemke2015StakeholderEI,
  title={Stakeholder engagement in policy development: challenges and opportunities for human genomics},
  author={Amy A Lemke and Julie N. Harris-Wai},
  journal={Genetics in Medicine},
  year={2015},
  volume={17},
  pages={949-957}
}
Along with rapid advances in human genomics, policies governing genomic data and clinical technologies have proliferated. Stakeholder engagement is widely lauded as an important methodology for improving clinical, scientific, and public health policy decision making. The purpose of this paper is to examine how stakeholder engagement is used to develop policies in genomics research and public health areas, as well as to identify future priorities for conducting evidence-based stakeholder… 

Figures, Tables, and Topics from this paper

Stakeholders in the Development of the National Unified Health Research Agenda of the Philippines
Objectives. Stakeholders and stakeholder engagement in agenda setting are not well documented despite its increased recognition. This paper aimed to describe stakeholder engagement in the agenda
Methodological Reflection on an Initiated Expert Stakeholder Engagement Process. A Case Study of a Dementia Prediction Discourse
BackgroundEngagement and participation are vital for including experiences, opinions, or expertise regarding the need for action and specifying goals of relevant stakeholders. In recent years,
Engaging publics in biobanking and genetic research governance - a literature review towards informing practice in India
Background: There is growing interest in advancing biobanking and genetic research in many countries, including India. Concurrently, more importance is being placed on participatory approaches
Engaging publics in biobanking and genetic research governance - a literature review towards informing practice in India
Background: There is growing interest in advancing biobanking and genetic research in many countries, including India. Concurrently, more importance is being placed on participatory approaches
Systematic Review of Quantitative Measures of Stakeholder Engagement
TLDR
The utility of stakeholder engagement has been well established in the literature, but there are few examples of measurement and evaluation of the degree to which stakeholders are engaged in these activities and the impact of engagement on positive outcomes.
Expect the unexpected? Challenges of prospectively exploring stakeholder engagement in research
Stakeholder engagement in research is increasingly viewed as making a major contribution to assisting impact. This paper draws on a longitudinal, prospective impact study exploring stakeholder
Engaging community stakeholders in research on best practices for clinical genomic sequencing
TLDR
The NCGENES 2 study explores the impact of engagement between clinicians and caregivers of children with undiagnosed conditions in the context of a diagnostic genomic sequencing study.
The ECOUTER methodology for stakeholder engagement in translational research
BackgroundBecause no single person or group holds knowledge about all aspects of research, mechanisms are needed to support knowledge exchange and engagement. Expertise in the research setting
Stakeholder engagement in the health policy process in a low income country: a qualitative study of stakeholder perceptions of the challenges to effective inclusion in Malawi
TLDR
serious challenges to the meaningful and equitable engagement of local level stakeholder groups in the health policy process were identified and issues of trust, accountability and hierarchy in donor-citizen-government relations must be addressed.
PROSPECTS OF STAKEHOLDER ENGAGEMENT IN PUBLIC POLICY: A CASE OF INDIA
  • Aditi Tyagi
  • Business
    IJASOS- International E-journal of Advances in Social Sciences
  • 2019
The shift from government to governance necessitated the role of multiple stakeholders in policy process and called for an approach that could optimally facilitate the process. Resulting adoption of
...
1
2
3
4
5
...

References

SHOWING 1-10 OF 57 REFERENCES
Developing Stakeholder Involvement for Introducing Public Health Genomics into Public Policy
TLDR
Some of the areas of public policy that might involve PHG are discussed, principles on the need for stakeholder involvement are set out, and the range of potential stakeholders that need to be considered when working to incorporate PHG into new and existing policies are described.
Evidence synthesis and guideline development in genomic medicine: current status and future prospects
TLDR
Ongoing efforts are required to establish criteria for guideline development in genomic medicine as proposed by the Institute of Medicine.
Community engagement in biobanking: Experiences from the eMERGE Network
TLDR
Community engagement efforts undertaken by six United States biobanks, various outcomes from these engagements, and lessons learned are described to provide useful insights and potential strategies for the various disciplines that work with communities involved in biobank-based genomic research.
Patient and family engagement: a framework for understanding the elements and developing interventions and policies.
TLDR
The levels at which patient engagement can occur across the health care system are discussed, from the direct care setting to incorporating patient engagement into organizational design, governance, and policy making.
The EGAPP initiative: lessons learned
TLDR
Evaluation of Genomic Applications in Practice and Prevention methods have evolved to address implications of the proliferation of genome-wide association studies and are currently expanding to face challenges expected from clinical implementation of whole-genome sequencing tests.
How best to engage patients, doctors, and other stakeholders in designing comparative effectiveness studies.
TLDR
Five key principles are identified for the effective engagement of a broad coalition of participants in research intended to improve health care and control costs to get participants to "buy in" to the process and understand their roles.
Community Engagement in US Biobanking: Multiplicity of Meaning and Method
TLDR
Perceptions and practices of community engagement (CE) among individuals who operate 6 diverse biobanks in the US are examined, finding the interpretation of CE varies widely among biobank employees, ultimately affecting how CE is practiced and what goals are achieved.
Analyzing Public Health Policy: Three Approaches
  • J. Coveney
  • Political Science, Medicine
    Health promotion practice
  • 2010
TLDR
Three approaches that simplify policy analysis are discussed: Bacchi's “What’s the problem?” approach, Colebatch's governmentality approach, and Bridgman and Davis's policy cycle, which provides an analytical framework from which to rigorously study policy.
Managing the introduction of biobanks to potential participants: lessons from a deliberative public forum.
TLDR
There is general agreement that introduction of research biobanks to potential donors should be conducted face to face, and by a medical professional known to the donor, and depending on donor circumstances, is acceptable during either pre- or postoperative periods.
How the Patient-Centered Outcomes Research Institute is engaging patients and others in shaping its research agenda.
TLDR
PCORI's approach is described, which is emblematic of the organization's mandate under the Affordable Care Act to seek meaningful ways to integrate the patient's voice into the research process, and how it is being used in selection of research that PCORI will fund is described.
...
1
2
3
4
5
...