scholarly journals The future of myeloma research in Canada and beyond: results of a James Lind Alliance priority setting partnership

2021 ◽  
Author(s):  
Samantha Fowler ◽  
Lauren McLaughlin ◽  
Sarah Bridges ◽  
Marc Robichaud ◽  
Barbara Ridgway ◽  
...  
Keyword(s):  
Priority Setting ◽  
The Future ◽  
James Lind Alliance ◽  
Priority Setting Partnership

scholarly journals Recommendations from a James Lind Alliance priority setting partnership - a qualitative interview study

2020 ◽  
Vol 6 (1) ◽  
Author(s):  
Karin Jongsma ◽  
Juliette van Seventer ◽  
Anouk Verwoerd ◽  
Annemiek van Rensen
Keyword(s):  
Decision Making ◽  
Juvenile Idiopathic Arthritis ◽  
Priority Setting ◽  
Qualitative Interview ◽  
Interview Study ◽  
Research Priority ◽  
Qualitative Interview Study ◽  
The Future ◽  
James Lind Alliance ◽  
Priority Setting Partnership

Abstract Background The James Lind Alliance (JLA) offers a method for research priority setting with patients, clinicians and carers. The method is increasingly used but publications primarily discuss the outcome of such projects, rather than reflecting on the JLA method itself. Scrutiny of the method is crucial in order to understand and correctly interpret its outcomes. Methods We conducted a qualitative interview study with people involved in a JLA project into Juvenile Idiopathic Arthritis (JIA) (n = 30) to better understand the mechanisms, procedures and decisional processes during such a project and to formulate recommendations for those who consider starting a JLA project in the future. Results Four main themes were identified: 1) motivations, goals and expectations 2) inclusivity, roles and representation 3) procedures and decision-making 4) outcomes and future steps. Conclusion While the top 10 of ‘evidence uncertainties’ seems to take the centre stage in JLA projects, the ways in which these priorities are determined may be influenced by ‘process uncertainties’. We have formulated ten specific recommendations for future JLA projects. Reflection on and reporting of these process uncertainties would contribute to the improvement of JLA projects and increase the validity of the outcome of such projects.

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 The top 10 research priorities for psoriasis in the U.K.: results of a James Lind Alliance psoriasis Priority Setting Partnership

2019 ◽  
Vol 181 (4) ◽  
pp. 871-873 ◽  
Author(s):  
R. Majeed‐Ariss ◽  
M. McPhee ◽  
H. McAteer ◽  
C.E.M. Griffiths ◽  
H. Young
Keyword(s):  
Priority Setting ◽  
Research Priorities ◽  
James Lind Alliance ◽  
Priority Setting Partnership

scholarly journals What are the most important unanswered research questions in trial retention? A James Lind Alliance Priority Setting Partnership: the PRioRiTy II (Prioritising Retention in Randomised Trials) study

Trials ◽  
2019 ◽  
Vol 20 (1) ◽  
Author(s):  
Dan Brunsdon ◽  
Linda Biesty ◽  
Peter Brocklehurst ◽  
Valerie Brueton ◽  
Declan Devane ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Priority Setting ◽  
Online Survey ◽  
Consensus Meeting ◽  
Randomised Trials ◽  
Face To Face ◽  
Key Stakeholders ◽  
James Lind Alliance ◽  
Research Questions ◽  
Priority Setting Partnership

Abstract Background One of the top three research priorities for the UK clinical trial community is to address the gap in evidence-based approaches to improving participant retention in randomised trials. Despite this, there is little evidence supporting methods to improve retention. This paper reports the PRioRiTy II project, a Priority Setting Partnership (PSP) that identified and prioritised unanswered questions and uncertainties around trial retention in collaboration with key stakeholders. Methods This PSP was conducted in collaboration with the James Lind Alliance, a non-profit making initiative, to support key stakeholders (researchers, patients, and the public) in jointly identifying and agreeing on priority research questions. There were three stages. (1) First an initial online survey was conducted consisting of six open-ended questions about retention in randomised trials. Responses were coded into thematic groups to create a longlist of questions. The longlist of questions was checked against existing evidence to ensure that they had not been answered by existing research. (2) An interim stage involved a further online survey where stakeholders were asked to select questions of key importance from the longlist. (3) A face-to-face consensus meeting was held, where key stakeholder representatives agreed on an ordered list of 21 unanswered research questions for methods of improving retention in randomised trials. Results A total of 456 respondents yielded 2431 answers to six open-ended questions, from which 372 questions specifically about retention were identified. Further analysis included thematically grouping all data items within answers and merging questions in consultation with the Steering Group. This produced 27 questions for further rating during the interim survey. The top 21 questions from the interim online survey were brought to a face-to-face consensus meeting in which key stakeholder representatives prioritised the order. The ‘Top 10’ of these are reported in this paper. The number one ranked question was ’What motivates a participant’s decision to complete a clinical trial?’ The entire list will be available at www.priorityresearch.ie. Conclusion The Top 10 list can inform the direction of future research on trial methods and be used by funders to guide projects aiming to address and improve retention in randomised trials.

scholarly journals Identifying Priorities for Physiotherapy Research in the UK: the James Lind Alliance Physiotherapy Priority Setting Partnership

Physiotherapy ◽  
2020 ◽  
Vol 107 ◽  
pp. 161-168
Author(s):  
Gabrielle Rankin ◽  
Rachael Summers ◽  
Katherine Cowan ◽  
Karen Barker ◽  
Kate Button ◽  
...  
Keyword(s):  
Priority Setting ◽  
James Lind Alliance ◽  
The Uk ◽  
Priority Setting Partnership

scholarly journals Identifying and prioritising unanswered research questions for people with hyperacusis: James Lind Alliance Hyperacusis Priority Setting Partnership

BMJ Open ◽  
2019 ◽  
Vol 9 (11) ◽  
pp. e032178 ◽  
Author(s):  
Kathryn Fackrell ◽  
Linda Stratmann ◽  
Veronica Kennedy ◽  
Carol MacDonald ◽  
Hilary Hodgson ◽  
...  
Keyword(s):  
Lived Experience ◽  
Priority Setting ◽  
Healthcare Professionals ◽  
Research Priorities ◽  
Current Evidence ◽  
Future Research ◽  
James Lind Alliance ◽  
Essential Resource ◽  
Underlying Mechanisms ◽  
Priority Setting Partnership

ObjectiveTo determine research priorities in hyperacusis that key stakeholders agree are the most important.Design/settingA priority setting partnership using two international surveys, and a UK prioritisation workshop, adhering to the six-staged methodology outlined by the James Lind Alliance.ParticipantsPeople with lived experience of hyperacusis, parents/carers, family and friends, educational professionals and healthcare professionals who support and/or treat adults and children who experience hyperacusis, including but not limited to surgeons, audiologists, psychologists and hearing therapists.MethodsThe priority setting partnership was conducted from August 2017 to July 2018. An international identification survey asked respondents to submit any questions/uncertainties about hyperacusis. Uncertainties were categorised, refined and rephrased into representative indicative questions using thematic analysis techniques. These questions were verified as ‘unanswered’ through searches of current evidence. A second international survey asked respondents to vote for their top 10 priority questions. A shortlist of questions that represented votes from all stakeholder groups was prioritised into a top 10 at the final prioritisation workshop (UK).ResultsIn the identification survey, 312 respondents submitted 2730 uncertainties. Of those uncertainties, 593 were removed as out of scope, and the remaining were refined into 85 indicative questions. None of the indicative questions had already been answered in research. The second survey collected votes from 327 respondents, which resulted in a shortlist of 28 representative questions for the final workshop. Consensus was reached on the top 10 priorities for future research, including identifying causes and underlying mechanisms, effective management and training for healthcare professionals.ConclusionsThese priorities were identified and shaped by people with lived experience, parents/carers and healthcare professionals, and as such are an essential resource for directing future research in hyperacusis. Researchers and funders should focus on addressing these priorities.

scholarly journals EPS1.9 Question CF: a James Lind Alliance Priority Setting Partnership in cystic fibrosis

2017 ◽  
Vol 16 ◽  
pp. S38 ◽  
Author(s):  
N.J. Rowbotham ◽  
S. Smith ◽  
M. McPhee ◽  
Z.C. Elliott ◽  
O. Rayner ◽  
...  
Keyword(s):  
Cystic Fibrosis ◽  
Priority Setting ◽  
James Lind Alliance ◽  
Priority Setting Partnership
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