A Multi-Stakeholder Consensus-Driven Research Agenda for Better Understanding and Supporting the Emotional Impact of Harmful Events on Patients and Families

2018 ◽  
Vol 44 (7) ◽  
pp. 424-435 ◽  
Author(s):  
Sigall K. Bell ◽  
Jason M. Etchegaray ◽  
Elizabeth Gaufberg ◽  
Elizabeth Lowe ◽  
Madelene J. Ottosen ◽  
...  
2021 ◽  
Author(s):  
Elizabeth Clearfield ◽  
Veronica Miller ◽  
Joseph Nadglowski ◽  
Katherine Barradas ◽  
Jennifer Al Naber ◽  
...  

2020 ◽  
Author(s):  
Katharina M Lang ◽  
Kathryn L. Harrison ◽  
Paula R. Williamson ◽  
Brian J.P. Huntly ◽  
Gert Ossenkoppele ◽  
...  

Abstract Background Acute myeloid leukemia is the most common acute leukemia in adults with an unacceptably low cure rate. In recent years a number of new treatment strategies and compounds were developed for the treatment of acute myeloid leukemia. There were several randomized, controlled clinical trials with the objective to improve patients’ management and patients’ outcome in acute myeloid leukemia. Unfortunately, these trials are not always directly comparable, as they do not measure the same outcomes and currently there are no core outcome sets that can be utilized to guide outcome selection and harmonization in this disease area. The HARMONY Alliance is a public-private European Network established in 2017, which currently includes 53 partners and 32 associated members from 22 countries. Amongst many other goals of the HARMONY Alliance, Work Package 2 focuses on defining outcomes that are relevant to each hematological malignancy. In accordance, a pilot study will be performed to define core outcome set in acute myeloid leukemia. Methods The pilot study will use a three-round Delphi survey and a final consensus meeting to define a core outcome set. Participants will be recruited from different stakeholder groups, including patients, clinicians, regulators and members of the European Federation of Pharmaceutical Industries and Associations (EFPIA). At the pre-Delphi stage a literature research was conducted followed by several semi-structured interviews of clinical public and private key opinion leaders. Subsequently the preliminary outcome list was discussed in several multi-stakeholder face-to-face meetings. The Delphi survey will reduce the preliminary outcome list to essential core outcomes. After completing the last Delphi round a final face-to-face meeting is planned to achieve consensus about core outcome set in acute myeloid leukemia. Discussion The pilot Delphi as part of HARMONY Alliance aims to define a core outcome set in acute myeloid leukemia based on a multi-stakeholder consensus. Such a core outcome set will help to allow consistent comparison of future clinical trials and real world evidence research and ensures that appropriate outcomes valued by a range of stakeholders are measured within future trials.


2019 ◽  
Vol 53 (3) ◽  
Author(s):  
Alejandra M. Libunao ◽  
Reneepearl Kim P. Sales ◽  
Jaifred Christian F. Lopez ◽  
Ma. Rowena H. Alcido ◽  
Lester Sam A. Geroy ◽  
...  

Background. Social dynamics, specifically personalities, power dynamics, and emotions, have been shown to influence the methods, outputs, and quality of multi-stakeholder processes, especially the development of a national health research agenda. Objective and Methods. Using a case analysis approach utilizing related conceptual frameworks, the paper determined how personalities, power dynamics, and emotions affected the research priority-setting exercise, identified lessons learned, and recommended how to effectively manage these social dynamics in consultations. Data gathering methods were participant observation and process documentation, results of which were codified and analyzed. Results. Dominant personalities, stakeholders with power, and stakeholders that openly expressed dissatisfaction were most likely to attempt to change the methods and final outputs of the consultation, with varying level of success. Other dominant personalities used their power constructively for a smooth flow of generating and agreeing on ideas. Conclusion. In this case, social dynamics was shown to heavily influence the decision-making process, thus underlining its importance in organizing multisectoral representation. Effectively managing social dynamics may thus have to consider building trust and respect between participants, mediating discussions, reaching a mutually beneficial solution, and establishing and implementing mutually agreed house rules. The significant role of facilitators in developing a climate for truly inclusive participation must also be recognized.


2020 ◽  
Vol 23 (5) ◽  
pp. 679-697
Author(s):  
Koen Leurs ◽  
Irati Agirreazkuenaga ◽  
Kevin Smets ◽  
Melis Mevsimler

Serving as the introduction to the special issue on ‘Migrant narratives’, this article proposes a multi-perspectival and multi-stakeholder analysis of how migration is narrated in the media in the last decade. This research agenda is developed by focussing on groups of actors that are commonly studied in isolation from each other: (1) migrants, (2) media professionals such as journalists and spokespersons from humanitarian organizations, (3) governments and corporations and (4) artists and activists. We take a relational approach to recognize how media power is articulated alongside a spectrum of more top-down and more bottom-up perspectives, through specific formats, genres and styles within and against larger frameworks of governmentality. Taken together, the poetics and politics of migrant narratives demand attention respectively for how stakeholders variously aesthetically present and politically represent migration. The opportunities, challenges, problems and commitments observed among the four groups of actors also provide the means to rethink our practice and responsibilities as media and migration scholars contributing to decentring media technologies and re-humanizing migrants.


2021 ◽  
Vol 8 (1) ◽  
pp. e42-e50
Author(s):  
Sharon R Lewin ◽  
Timothy Attoye ◽  
Cathy Bansbach ◽  
Brian Doehle ◽  
Karine Dubé ◽  
...  

2020 ◽  
Author(s):  
Rami Kaplan ◽  
Nora Lohmeyer

Abstract The privatization of governance including the institution of nonbinding corporate social responsibility (CSR) frameworks to govern the social and economic conduct of large corporations is a controversial global process, which unfolds between and within nations. Studies of transnational private governance suggest that CSR frameworks reflect bargains between business and nonbusiness actors, reached on the background of the unfeasibility of intergovernmental binding regulation. But what explains the rise of such multi-stakeholder initiatives on the national level—and particularly in European coordinated market economies—where public forms of governance are historically well-institutionalized and more feasible? Based on our power resource theory (PRT)-informed study of Germany’s adoption of a national CSR framework, we argue that such settings motivate nonbusiness actors to resist, rather than engage in, business-driven processes of the privatization of governance. The struggle is decided by the state, which in Germany used its public power to enforce multi-stakeholder consensus around privatized forms. Our findings thus extend scholarly recognition of the role played by public authority in the privatization of governance. More generally, we promote a comparative capitalism perspective for the study of the politics of private governance.


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