Dataset Information

Ideals, practices, and future prospects of stakeholder involvement in sustainability science.

ABSTRACT: This paper evaluates current stakeholder involvement (SI) practices in science through a web-based survey among scholars and researchers engaged in sustainability or transition research. It substantiates previous conceptual work with evidence from practice by building on four ideal types of SI in science. The results give an interesting overview of the varied landscape of SI in sustainability science, ranging from the kinds of topics scientists work on with stakeholders, over scientific trade-offs that arise in the field, to improvements scientists wish for. Furthermore, the authors describe a discrepancy between scientists' ideals and practices when working with stakeholders. On the conceptual level, the data reflect that the democratic type of SI is the predominant one concerning questions on the understanding of science, the main goal, the stage of involvement in the research process, and the science-policy interface. The fact that respondents expressed agreement to several types shows they are guided by multiple and partly conflicting ideals when working with stakeholders. We thus conclude that more conceptual exchange between practitioners, as well as more qualitative research on the concepts behind practices, is needed to better understand the stakeholder-scientist nexus.

SUBMITTER: Mielke J

PROVIDER: S-EPMC5740662 | biostudies-literature | 2017 Dec

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Ideals, practices, and future prospects of stakeholder involvement in sustainability science.

Mielke Jahel J Vermaßen Hannah H Ellenbeck Saskia S

Proceedings of the National Academy of Sciences of the United States of America 20171121 50

This paper evaluates current stakeholder involvement (SI) practices in science through a web-based survey among scholars and researchers engaged in sustainability or transition research. It substantiates previous conceptual work with evidence from practice by building on four ideal types of SI in science. The results give an interesting overview of the varied landscape of SI in sustainability science, ranging from the kinds of topics scientists work on with stakeholders, over scientific trade-of ...[more]

PMID: 29162698

Similar Datasets

Project description:IntroductionInvolving patients in decision making adds value in the context of pharmacovigilance (PV). This added value goes beyond participation in spontaneous reporting systems for adverse drug reactions. However, there is a gap between allowing patients to report and actual patient involvement. Views regarding best practices from regulators, patient organizations and pharmaceutical companies could help increase and improve patient involvement in PV.ObjectiveThe aim of this study was to investigate the factors contributing to best practices for patient involvement in PV and to develop a definition of patient involvement based on a qualitative multistakeholder study across Europe.MethodsA literature review was conducted to map the field of study and obtain insights for the elaboration of an interview guide. Subsequently, patient representatives, members of the pharmaceutical industry and regulators were invited to participate in interviews. These interviews were analyzed using NVIVO® software and employing reflective thematic analysis.ResultsA total of 20 interviews were conducted with representatives at both the national and European levels. The best practices identified were engagement from the start, face-to-face communication, a full circle of feedback, same-level partners, structured involvement and guidelines, establishing common goals, patient education and empowerment, and developing trust and balance. These activities can be implemented via deep collaboration among stakeholders. A definition of patient involvement was constructed in accordance with the input of all stakeholder groups, which reflects the involvement of all types of patients at all levels of the decision-making process.ConclusionIn this study, we developed a definition for patient involvement based on qualitative interviews. The factors contributing to best practices for patient involvement were mentioned across stakeholder groups and aimed to stimulate patient involvement in PV. Patients are eager to become equal partners and to engage effortlessly in the same manner as other stakeholders.

Project description:Ataxia-telangiectasia (A-T) is an autosomal recessive multi-system disorder caused by mutation in the ataxia-telangiectasia mutated gene (ATM). ATM is a large serine/threonine protein kinase, a member of the phosphoinositide 3-kinase-related protein kinase (PIKK) family whose best-studied function is as master controller of signal transduction for the DNA damage response (DDR) in the event of double strand breaks (DSBs). The DDR rapidly recognizes DNA lesions and initiates the appropriate cellular programs to maintain genome integrity. This includes the coordination of cell-cycle checkpoints, transcription, translation, DNA repair, metabolism, and cell fate decisions, such as apoptosis or senescence. DSBs can be generated by exposure to ionizing radiation (IR) or various chemical compounds, such as topoisomerase inhibitors, or can be part of programmed generation and repair of DSBs via cellular enzymes needed for the generation of the antibody repertoire as well as the maturation of germ cells. AT patients have immunodeficiency, and are sterile with gonadal dysgenesis as a result of defect in meiotic recombination. In the cells of nervous system ATM has additional role in vesicle dynamics as well as in the maintenance of the epigenetic code of histone modifications. Moderate levels of ATM are associated with prolonged lifespan through resistance to oxidative stress. ATM inhibitors are being viewed as potential radiosensitizers as part of cancer radiotherapy. Though there is no cure for the disease at present, glucocorticoids have been shown to induce alternate splicing site in the gene for ATM partly restoring its activity, but their most effective timing in the disease natural history is not yet known. Gene therapy is promising but large size of the gene makes it technically difficult to be delivered across the blood-brain barrier at present. As of now, apart from glucocorticoids, use of histone deacetylase inhibitors/EZH2 to minimize effect of the absence of ATM, looks more promising.

Dataset Information

Ideals, practices, and future prospects of stakeholder involvement in sustainability science.

Publications

Ideals, practices, and future prospects of stakeholder involvement in sustainability science.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets