Prioritization of therapy uncertainties in congenital ichthyosis: results from a Priority Setting Partnership

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

scholarly journals Long-term views on chronic kidney disease research priorities among stakeholders engaged in a priority-setting partnership: A qualitative study

2018 ◽  
Vol 21 (6) ◽  
pp. 1142-1149 ◽  
Author(s):  
Meghan J. Elliott ◽  
Joanna E. M. Sale ◽  
Zahra Goodarzi ◽  
Linda Wilhelm ◽  
Andreas Laupacis ◽  
...  
Keyword(s):  
Chronic Kidney Disease ◽  
Kidney Disease ◽  
Qualitative Study ◽  
Priority Setting ◽  
Research Priorities ◽  
Disease Research ◽  
A Priority ◽  
Priority Setting Partnership

scholarly journals Partnering For Pain: a Priority Setting Partnership to identify patient-oriented research priorities for pediatric chronic pain in Canada

CMAJ Open ◽  
2019 ◽  
Vol 7 (4) ◽  
pp. E654-E664 ◽  
Author(s):  
Kathryn A. Birnie ◽  
Katherine Dib ◽  
Carley Ouellette ◽  
Mary Anne Dib ◽  
Kimberly Nelson ◽  
...  
Keyword(s):  
Chronic Pain ◽  
Priority Setting ◽  
Research Priorities ◽  
Pediatric Chronic Pain ◽  
A Priority ◽  
Priority Setting Partnership ◽  
Oriented Research

scholarly journals Researching what matters to improve chronic pain care in Canada: A priority-setting partnership process to support patient-oriented research

2018 ◽  
Vol 2 (1) ◽  
pp. 191-204 ◽  
Author(s):  
Patricia Poulin ◽  
Yaadwinder Shergill ◽  
Heather Romanow ◽  
Jason W. Busse ◽  
Christine T. Chambers ◽  
...  
Keyword(s):  
Chronic Pain ◽  
Priority Setting ◽  
A Priority ◽  
Pain Care ◽  
Priority Setting Partnership ◽  
Oriented Research ◽  
What Matters

scholarly journals Priorities for research in miscarriage: a priority setting partnership between people affected by miscarriage and professionals following the James Lind Alliance methodology

BMJ Open ◽  
2017 ◽  
Vol 7 (8) ◽  
pp. e016571 ◽  
Author(s):  
Matthew Prior ◽  
Carmel Bagness ◽  
Jane Brewin ◽  
Arri Coomarasamy ◽  
Lucy Easthope ◽  
...  
Keyword(s):  
Priority Setting ◽  
Emotional Support ◽  
Healthcare Professionals ◽  
Face To Face ◽  
Electronic Survey ◽  
James Lind Alliance ◽  
Emotional Aspects ◽  
A Priority ◽  
Initial Survey ◽  
Priority Setting Partnership

ObjectivesTo identify and prioritise important research questions for miscarriage.DesignA priority setting partnership using prospective surveys and consensus meetings following methods advocated by the James Lind Alliance.SettingUK.ParticipantsWomen and those affected by miscarriage working alongside healthcare professionals.ResultsIn the initial survey, 1093 participants (932 women who have experienced miscarriage, 8 partners, 17 family members, friends or colleagues, 104 healthcare professionals and eight charitable organisations) submitted 3279 questions. A review of existing literature identified a further 64. Non-questions were removed, and the remaining questions were categorised and summarised into 58 questions. In an interim electronic survey, 2122 respondents chose their top 10 priorities from the 58 summary questions. The 25 highest ranked in the survey were prioritised at a final face-to-face workshop. In summary, the top 10 priorities were ranked as follows: research into preventative treatment, emotional aspects in general, investigation, relevance of pre-existing medical conditions, emotional support as a treatment, importance of lifestyle factors, importance of genetic and chromosomal causes, preconception tests, investigation after different numbers of miscarriage and male causal factors.ConclusionsThese results should be the focus of future miscarriage research. Presently, studies are being conducted to address the top priority; however, many other priorities, especially psychological and emotional support, are less well researched areas. We hope our results will encourage both researchers and funders to focus on these priorities.

scholarly journals Common hand and wrist conditions: creation of UK research priorities defined by a James Lind Alliance Priority Setting Partnership

BMJ Open ◽  
2021 ◽  
Vol 11 (3) ◽  
pp. e044207
Author(s):  
Alexia Karantana ◽  
Tim Davis ◽  
Donna Kennedy ◽  
Debbie Larson ◽  
Dominic Furniss ◽  
...  
Keyword(s):  
Priority Setting ◽  
Research Priorities ◽  
Treatment Modalities ◽  
Grant Applications ◽  
Charitable Organisation ◽  
James Lind Alliance ◽  
Treatment Uncertainties ◽  
The Uk ◽  
Survey Responses ◽  
Priority Setting Partnership

ObjectivePrioritisation of important treatment uncertainties for ‘Common Conditions Affecting the Hand and Wrist’ via a UK-based James Lind Alliance Priority Setting Partnership.SettingThis process was funded by a national charitable organisation and based in the UK.ParticipantsAnyone with experience of common conditions affecting the adult hand and wrist, including patients, carers and healthcare professionals. All treatment modalities delivered by a hand specialist, including therapists, surgeons or other allied professionals, were considered.InterventionsEstablished James Lind Alliance Priority Setting Partnership methods were employed.Electronic and paper questionnaires identified potential uncertainties. These were subsequently confirmed using relevant, up-to-date systematic reviews. A final list of top 10 research uncertainties was developed via a face-to-face workshop with representation from patients and clinicians. Impact of research was sought by surveying hand clinicians electronically.Outcome measuresThe survey responses and prioritisation—both survey and workshop based.ResultsThere were 889 individually submitted questions from the initial survey, refined to 59 uncertainties across 32 themes. Eight additional uncertainties were added from published literature before prioritisation by 261 participants and the workshop allowed the final top 10 list to be finalised. The top 10 has so far contributed to the award of over £3.8 million of competitively awarded funding.ConclusionsThe Common Conditions in the Hand and Wrist Priority Setting Partnership identified important research questions and has allowed research funders to identify grant applications which are important to both patients and clinicians

scholarly journals The kidney cancer research priority-setting partnership: Identifying the top 10 research priorities as defined by patients, caregivers, and expert clinicians

2017 ◽  
Vol 11 (12) ◽  
pp. 379-87 ◽  
Author(s):  
Jennifer Jones ◽  
Jaimin Bhatt ◽  
Jonathan Avery ◽  
Andreas Laupacis ◽  
Katherine Cowan ◽  
...  
Keyword(s):  
Cancer Research ◽  
Kidney Cancer ◽  
Priority Setting ◽  
Research Priorities ◽  
Research Network ◽  
Cancer Research Network ◽  
Research Priority ◽  
Funding Agencies ◽  
James Lind Alliance ◽  
Priority Setting Partnership

It is critically important to define disease-specific research priorities to better allocate limited resources. There is growing recognition of the value of involving patients and caregivers, as well as expert clinicians in this process. To our knowledge, this has not been done this way for kidney cancer. Using the transparent and inclusive process established by the James Lind Alliance, the Kidney Cancer Research Network of Canada (KCRNC) sponsored a collaborative consensus-based priority-setting partnership (PSP) to identify research priorities in the management of kidney cancer. The final result was identification of 10 research priorities for kidney cancer, which are discussed in the context of current initiatives and gaps in knowledge. This process provided a systematic and effective way to collaboratively establish research priorities with patients, caregivers, and clinicians, and provides a valuable resource for researchers and funding agencies.

scholarly journals Global health trials methodological research agenda: results from a priority setting exercise

Trials ◽  
2018 ◽  
Vol 19 (1) ◽  
Author(s):  
Anna Rosala-Hallas ◽  
Aneel Bhangu ◽  
Jane Blazeby ◽  
Louise Bowman ◽  
Mike Clarke ◽  
...  
Keyword(s):  
Global Health ◽  
Priority Setting ◽  
Research Agenda ◽  
Methodological Research ◽  
A Priority ◽  
Priority Setting Exercise

Implementing accountability for reasonableness – the case of pharmaceutical reimbursement in Sweden

2007 ◽  
Vol 2 (2) ◽  
pp. 153-171 ◽  
Author(s):  
SANDRA JANSSON
Keyword(s):  
Health Care ◽  
Cost Effectiveness ◽  
Social Learning ◽  
Priority Setting ◽  
Relative Importance ◽  
Priority Setting Process ◽  
Structured Interviews ◽  
Accountability For Reasonableness ◽  
Setting Process ◽  
A Priority

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.

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