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 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 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 Rare musculoskeletal diseases in adults: a research priority setting partnership with the James Lind Alliance

2020 ◽  
Vol 15 (1) ◽  
Author(s):  
Gerda Mickute ◽  
Kristina Staley ◽  
Heather Delaney ◽  
Oliver Gardiner ◽  
Amy Hunter ◽  
...  
Keyword(s):  
Priority Setting ◽  
Healthcare Professionals ◽  
Musculoskeletal Diseases ◽  
Research Priorities ◽  
Musculoskeletal Disease ◽  
Appropriate Treatment ◽  
James Lind Alliance ◽  
Priority Setting Partnership ◽  
Term Management

Abstract Background Osteogenesis imperfecta, fibrous dysplasia/McCune-Albright syndrome and X-linked hypophosphatemia are three rare musculoskeletal diseases characterised by bone deformities, frequent fractures and pain. Little high-quality research exists on appropriate treatment and long-term management of these conditions in adults. This is further worsened by limited research funding in rare diseases and a general mismatch between the existing research priorities and those of the patients. This partnership adopted the James Lind Alliance approach to identify the top 10 research priorities for rare musculoskeletal diseases in adults through joint patient, carer and healthcare professional collaboration. Results The initial survey for question collection recruited 198 respondents, submitting a total of 988 questions. 77% of the respondents were patients with a rare musculoskeletal disease. Following out-of-scope question exclusion, repeating query grouping and scientific literature check for answers, 39 questions on treatment and long-term management remained. In the second public survey, 220 respondents, of whom 85% were patients with a rare musculoskeletal disease, their carers, relatives or friends, prioritised these uncertainties, which allowed selection of the top 25. In the last stage, patients, carers and healthcare professionals gathered for a priority setting workshop to reach a consensus on the final top 10 research priorities. These focus on the uncertainties surrounding appropriate treatment and holistic long-term disease management, highlighting several aspects indirect to abnormal bone metabolism, such as extra-skeletal symptoms, psychological care of both patients and their families and disease course through ageing. Conclusions This James Lind Alliance priority setting partnership is the first to investigate rare bone diseases. The priorities identified here were developed jointly by patients, carers and healthcare professionals. We encourage researchers, funding bodies and other stakeholders to use these priorities in guiding future research for those affected by rare musculoskeletal disorders.

scholarly journals Future research priorities for lichen sclerosus – results of a James Lind Alliance Priority Setting Partnership

2019 ◽  
Vol 180 (5) ◽  
pp. 1236-1237 ◽  
Author(s):  
R.C. Simpson ◽  
S.M. Cooper ◽  
G. Kirtschig ◽  
S. Larsen ◽  
S. Lawton ◽  
...  
Keyword(s):  
Priority Setting ◽  
Research Priorities ◽  
Lichen Sclerosus ◽  
Future Research ◽  
James Lind Alliance ◽  
Priority Setting Partnership
Sign in / Sign up

Export Citation Format

Share Document