scholarly journals Hearing parents' voices: A priority-setting workshop to inform a suite of psychological resources for parents of children with rare genetic epilepsies

2021 ◽  
pp. 100014
Author(s):  
Suzanne M. Nevin ◽  
Claire E. Wakefield ◽  
Ann Dadich ◽  
Fleur Le Marne ◽  
Rebecca Macintosh ◽  
...  
2018 ◽  
Vol 21 (6) ◽  
pp. 1142-1149 ◽  
Author(s):  
Meghan J. Elliott ◽  
Joanna E. M. Sale ◽  
Zahra Goodarzi ◽  
Linda Wilhelm ◽  
Andreas Laupacis ◽  
...  

Trials ◽  
2018 ◽  
Vol 19 (1) ◽  
Author(s):  
Anna Rosala-Hallas ◽  
Aneel Bhangu ◽  
Jane Blazeby ◽  
Louise Bowman ◽  
Mike Clarke ◽  
...  

2015 ◽  
Vol 173 (5) ◽  
pp. 1280-1283 ◽  
Author(s):  
A. Hernández-Martín ◽  
P. Dávila-Seijo ◽  
R. de Lucas ◽  
E. Baselga ◽  
P. Redondo ◽  
...  

2007 ◽  
Vol 2 (2) ◽  
pp. 153-171 ◽  
Author(s):  
SANDRA JANSSON

AbstractThis paper aims to describe the priority-setting procedure for new original pharmaceuticals practiced by the Swedish Pharmaceutical Benefits Board (LFN), to analyse the outcome of the procedure in terms of decisions and the relative importance of ethical principles, and to examine the reactions of stakeholders. All the ‘principally important’ decisions made by the LFN during its first 33 months of operation were analysed. The study is theoretically anchored in the theory of fair and legitimate priority-setting procedures by Daniels and Sabin, and is based on public documents, media articles, and semi-structured interviews. Only nine cases resulted in a rejection of a subsidy by the LFN and 15 in a limited or conditional subsidy. Total rejections rather than limitations gave rise to actions by stakeholders. Primarily, the principle of cost-effectiveness was used when limiting/conditioning or totally rejecting a subsidy. This study suggests that implementing a priority-setting process that fulfils the conditions of accountability for reasonableness can result in a priority-setting process which is generally perceived as fair and legitimate by the major stakeholders and may increase social learning in terms of accepting the necessity of priority setting in health care. The principle of cost-effectiveness increased in importance when the demand for openness and transparency increased.


BMJ Open ◽  
2017 ◽  
Vol 7 (8) ◽  
pp. e015500 ◽  
Author(s):  
Dyon Hoekstra ◽  
Margot Mütsch ◽  
Christina Kien ◽  
Ansgar Gerhardus ◽  
Stefan K Lhachimi

IntroductionThe Cochrane Collaboration aims to produce relevant and top priority evidence that responds to existing evidence gaps. Hence, research priority setting (RPS) is important to identify which potential research gaps are deemed most important. Moreover, RPS supports future health research to conform both health and health evidence needs. However, studies that are prioritising systematic review topics in public health are surprisingly rare. Therefore, to inform the research agenda of Cochrane Public Health Europe (CPHE), we introduce the protocol of a priority setting study on systematic review topics in several European countries, which is conceptualised as pilot.Methods and analysisWe will conduct a two-round modified Delphi study in Switzerland, incorporating an anonymous web-based questionnaire, to assess which topics should be prioritised for systematic reviews in public health. In the first Delphi round public health stakeholders will suggest relevant assessment criteria and potential priority topics. In the second Delphi round the participants indicate their (dis)agreement to the aggregated results of the first round and rate the potential review topics with the predetermined criteria on a four-point Likert scale. As we invite a wide variety of stakeholders we will compare the results between the different stakeholder groups.Ethics and disseminationWe have received ethical approval from the ethical board of the University of Bremen, Germany (principal investigation is conducted at the University of Bremen) and a certificate of non-objection from the Canton of Zurich, Switzerland (fieldwork will be conducted in Switzerland). The results of this study will be further disseminated through peer reviewed publication and will support systematic review author groups (i.a. CPHE) to improve the relevance of the groups´ future review work. Finally, the proposed priority setting study can be used as a framework by other systematic review groups when conducting a priority setting study in a different context.


CMAJ Open ◽  
2019 ◽  
Vol 7 (4) ◽  
pp. E654-E664 ◽  
Author(s):  
Kathryn A. Birnie ◽  
Katherine Dib ◽  
Carley Ouellette ◽  
Mary Anne Dib ◽  
Kimberly Nelson ◽  
...  

2018 ◽  
Vol 44 (5) ◽  
pp. 305-309 ◽  
Author(s):  
Samuel Altmann

As the demand for healthcare rises, so does the need for priority setting in healthcare. In this paper, I consider a prominent priority-setting principle: proportional shortfall. My purpose is to argue that proportional shortfall, as a principle, should not be adopted. My key criticism is that proportional shortfall fails to consider past health.Proportional shortfall is justified as it supposedly balances concern for prospective health while still accounting for lifetime health, even though past health is deemed irrelevant. Accounting for this lifetime perspective means that the principle may indirectly consider past health by accounting for how far an individual is from achieving a complete, healthy life. I argue that proportional shortfall does not account for this lifetime perspective as it fails to incorporate the fair innings argument as originally claimed, undermining its purported justification.I go on to demonstrate that the case for ignoring past health is weak, and argue that past health is at least sometimes relevant for priority-setting decisions. Specifically, when an individual’s past health has a direct impact on current or future health, and when one individual has enjoyed significantly more healthy life years than another.Finally, I demonstrate that by ignoring past illnesses, even those entirely unrelated to their current illness, proportional shortfall can lead to instances of double jeopardy, a highly problematic implication. These arguments give us reason to reject proportional shortfall.


Sign in / Sign up

Export Citation Format

Share Document