The Eczema Priority Setting Partnership: a collaboration between patients, carers, clinicians and researchers to identify and prioritize important research questions for the treatment of eczema

2013 ◽  
Vol 168 (3) ◽  
pp. 577-582 ◽  
Author(s):  
J.M. Batchelor ◽  
M.J. Ridd ◽  
T. Clarke ◽  
A. Ahmed ◽  
M. Cox ◽  
...  
Keyword(s):  
Priority Setting ◽  
Important Research ◽  
Research Questions ◽  
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 Equine pituitary pars intermedia dysfunction: Identifying research priorities for diagnosis, treatment and prognosis through a priority setting partnership

PLoS ONE ◽  
2021 ◽  
Vol 16 (1) ◽  
pp. e0244784
Author(s):  
Rebecca C. Tatum ◽  
Cathy M. McGowan ◽  
Rachel S. Dean ◽  
Joanne L. Ireland
Keyword(s):  
Thematic Analysis ◽  
Priority Setting ◽  
Evidence Synthesis ◽  
Future Research ◽  
Poor Responders ◽  
Pars Intermedia ◽  
Veterinary Surgeons ◽  
Research Questions ◽  
Priority Setting Partnership ◽  
Horse Owners

Pituitary pars intermedia dysfunction (PPID) is the most prevalent endocrine disorder of older equids. To date, key research areas likely to have the greatest impact on equine health have not been identified. In human medicine, public and patient involvement is widely used to inform research agendas. This study aimed to engage with veterinary surgeons and horse owners to identify evidence gaps (‘uncertainties’) and prioritise these into a list of the 10 most important PPID research questions. The James Lind Alliance (JLA) Priority Setting Partnership (PSP) Framework was adapted. Questions about the diagnosis, treatment and prognosis of PPID were gathered via an online survey targeting veterinary surgeons and horse owners with experience of PPID. Thematic analysis was used to form a longlist of collated indicative research questions (CIRQs), defined by the JLA as true ‘evidence uncertainties’ when not answered by a published, clinically relevant, up-to-date systematic review. In an interim prioritisation survey, questions were ranked by weighted scores creating a shortlist of 25 that were taken forward to the PSP workshop, where participants reached a consensus on the top 10. Useable responses containing ≥1 question were received from 524 respondents (92.6% owners, n = 485; 7.4% veterinary surgeons, n = 39). After screening for relevance, 1,260 individual questions were included in thematic analysis, resulting in 47 CIRQs. Interim prioritisation votes for the CIRQs were received from 360 respondents. The top 10 questions prioritised at the PSP workshop focused on long-term prognosis, diagnostic accuracy, efficacy of pergolide treatment, alternative treatment/management strategies and potential treatment options for poor responders to pergolide. The quantity of questions generated indicates an extensive number of uncertainties regarding the diagnosis, treatment and prognosis of PPID. The top 10 research questions will help to inform key areas for evidence synthesis and knowledge translation, and to direct future research into areas most important to end users involved in caring for and treating animals with PPID.

scholarly journals Top research priorities in liver and gallbladder disorders in the UK

BMJ Open ◽  
2019 ◽  
Vol 9 (3) ◽  
pp. e025045 ◽  
Author(s):  
Kurinchi S Gurusamy ◽  
Martine Walmsley ◽  
Brian R Davidson ◽  
Claire Frier ◽  
Barry Fuller ◽  
...  
Keyword(s):  
Priority Setting ◽  
Healthcare Professionals ◽  
Research Question ◽  
Research Priorities ◽  
Public Health Research ◽  
Delphi Panel ◽  
Delphi Consensus ◽  
Treatment Research ◽  
Research Questions ◽  
Priority Setting Partnership

ObjectivesThere is a mismatch between research questions considered important by patients, carers and healthcare professionals and the research performed in many fields of medicine. The non-alcohol-related liver and gallbladder disorders priority setting partnership was established to identify the top research priorities in the prevention, diagnostic and treatment of gallbladder disorders and liver disorders not covered by the James-Lind Alliance (JLA) alcohol-related liver disease priority setting partnership.DesignThe methods broadly followed the principles of the JLA guidebook. The one major deviation from the JLA methodology was the final step of identifying priorities: instead of prioritisation by group discussions at a consensus workshop involving stakeholders, the prioritisation was achieved by a modified Delphi consensus process.ResultsA total of 428 unique valid diagnostic or treatment research questions were identified. A literature review established that none of these questions were considered ‘answered’ that is, high-quality systematic reviews suggest that further research is not required on the topic. The Delphi panel achieved consensus (at least 80% Delphi panel members agreed) that a research question was a top research priority for six questions. Four additional research questions with highest proportion of Delphi panel members ranking the question as highly important were added to constitute the top 10 research priorities.ConclusionsA priority setting process involving patients, carers and healthcare professionals has been used to identify the top 10priority areas for research related to liver and gallbladder disorders. Basic, translational, clinical and public health research are required to address these uncertainties.

scholarly journals Nothing About Us Without Us: A Scoping Review and Priority-Setting Partnership in Type 1 Diabetes and Exercise

2019 ◽  
Author(s):  
Nika M.D. Klaprat ◽  
Nicole Askin ◽  
Andrea MacIntosh ◽  
Nicole Brunton ◽  
Jacqueline L. Hay ◽  
...  
Keyword(s):  
Type 1 Diabetes ◽  
Scoping Review ◽  
Priority Setting ◽  
Randomized Trials ◽  
Steering Committee ◽  
Exercise Interventions ◽  
Patient Reported ◽  
Research Questions ◽  
Priority Setting Partnership

AbstractObjectivesExamine the characteristics of patient engagement (PE) practices in exercise-based randomized trials in type 1 diabetes (T1D), and facilitate T1D stakeholders in determining the top ten list of priorities for exercise research.DesignTwo methodological approaches were employed: a scoping review and a modified James Lind Alliance priority-setting partnership.MethodsPublished (Medline, Embase, CINAHL, and Central databases) and grey literature (www.clinicaltrials.gov) were searched to identify randomized controlled trials of exercise interventions lasting minimum four weeks and available in English. We extracted information on PE and patient-reported outcomes (PROMs) to identify if patient perspectives had been implemented. Based on results, we set out to determine exercise research priorities as a first step towards a patient-engaged research agenda. An online survey was distributed across Canada to collect research questions from patients, caregivers and healthcare providers. We qualitatively analyzed submitted questions and compiled a long-list that a twelve-person stakeholder steering committee used to identify the top ten priority research questions.ResultsOf 9,962 identified sources, 19 published trials and 4 trial registrations fulfilled inclusion criteria. No evidence of PE existed in any included study. Most commonly measured PROMs were frequency of hypoglycemia (n=7) and quality of life (n=4). The priority-setting survey yielded 194 submitted research questions. Steering committee rankings identified 10 priorities focused on lifestyle factors and exercise modifications to maintain short-term glycemic control.ConclusionRecent exercise-based randomized trials in T1D have not included PE and PROMs. Patient priorities for exercise research have yet to be addressed with adequately designed clinical trials.

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

2019 ◽  
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 public) in jointly identifying and agreeing priority research questions. There were three stages (i) An initial online survey 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 they had not been answered by existing research. (ii) An interim stage, which involved a further online survey where stakeholders were asked to select questions of key importance from the longlist.. (iii) A face-to-face consensus meeting, where key stakeholder representatives agreed an ordered list of 21 unanswered research questions for methods of improving retention in randomised trials. Results 456 respondents yielded 2,431 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 is 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 Research priorities in fragility fractures of the lower limb and pelvis: a UK priority setting partnership with the James Lind Alliance

BMJ Open ◽  
2018 ◽  
Vol 8 (10) ◽  
pp. e023301 ◽  
Author(s):  
Miguel A Fernandez ◽  
Laura Arnel ◽  
Jenny Gould ◽  
Alwin McGibbon ◽  
Richard Grant ◽  
...  
Keyword(s):  
Priority Setting ◽  
Lower Limb ◽  
Healthcare Professionals ◽  
Weight Bearing ◽  
Research Priorities ◽  
Occupational Therapists ◽  
Fragility Fractures ◽  
James Lind Alliance ◽  
Research Questions ◽  
Priority Setting Partnership

ObjectiveTo determine research priorities in fragility fractures of the lower limb and pelvis which represent the shared priorities of patients, their friends and families, carers and healthcare professionals.Design/settingA national (UK) research priority setting partnership.ParticipantsPatients over 60 years of age who have experienced a fragility fracture of the lower limb or pelvis; carers involved in their care (both in and out of hospital); family and friends of patients; healthcare professionals involved in the treatment of these patients including but not limited to surgeons, anaesthetists, paramedics, nurses, general practitioners, physicians, physiotherapists and occupational therapists.MethodsUsing a multiphase methodology in partnership with the James Lind Alliance over 18 months (August 2016–January 2018), a national scoping survey asked respondents to submit their research uncertainties. These were amalgamated into a smaller number of research questions. The existing evidence was searched to ensure that the questions had not been answered. A second national survey asked respondents to prioritise the research questions. A final shortlist of 25 questions was taken to a multistakeholder workshop where a consensus was reached on the top 10 priorities.ResultsThere were 963 original uncertainties submitted by 365 respondents to the first survey. These original uncertainties were refined into 88 research questions of which 76 were judged to be true uncertainties following a review of the research evidence. Healthcare professionals and other stakeholders (patients, carers, friends and families) were represented equally in the responses. The top 10 represent uncertainties in rehabilitation, pain management, anaesthesia and surgery.ConclusionsWe report the top 10 UK research priorities in patients with fragility fractures of the lower limb and pelvis. The priorities highlight uncertainties in rehabilitation, postoperative physiotherapy, pain, weight-bearing, infection and thromboprophylaxis. The challenge now is to refine and deliver answers to these research priorities.

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