scholarly journals Top 10 research priorities for people living with pulmonary fibrosis, their caregivers, healthcare professionals and researchers

Thorax ◽  
2020 ◽  
pp. thoraxjnl-2020-215731
Author(s):  
Gabriella Tikellis ◽  
Allison Tong ◽  
Joanna Y T Lee ◽  
Tamera J. Corte ◽  
Alison J Hey-Cunningham ◽  
...  
Keyword(s):  
Pulmonary Fibrosis ◽  
Healthcare Professionals ◽  
Treatment Options ◽  
Research Priorities ◽  
Symptom Burden ◽  
Exercise Programme ◽  
Nominal Group ◽  
Face To Face ◽  
Research Questions ◽  
Stage 1

IntroductionPeople with pulmonary fibrosis (PF) experience a high symptom burden, reduced quality of life and a shortened lifespan. Treatment options are limited and little is known about what patients, caregivers and healthcare professionals (HCPs)/researchers consider as the most important research priorities. This study aimed to identify the top 10 research priorities for PF across all stakeholders.MethodsParticipants included people with PF, caregivers and HCPs/researchers involved with PF. The research priority setting exercise involved three stages: (1) identifying priorities using an open-ended questionnaire and thematic analysis, (2) development of specific research questions at a face-to-face workshop, and (3) online ranking of research questions to identify the top 10 research priorities using nominal group ranking method.Results196 participants completed stage 1 generating 560 questions and 14 research themes were identified. Stage 2 involved 32 participants and generated 53 indicative questions from which 39 were used for the final ranking. Stage 3 was completed by 270 participants. The top ranked priorities focussed on medications to reverse scarring in the lungs (ranked 1st), improving lung function (ranked 2nd, 6th and 8th), interventions aimed at alleviating symptoms (ranked 5th and 7th), prevention of PF (ranked 3rd and 4th) and the best exercise programme for PF (ranked 10th). There was good consensus among patients/carers and HCPs/researchers on the top 10 priorities, however, causes of acute exacerbations and early diagnosis for improving survival, was ranked higher by HCPs/researchers.ConclusionInterventions for preserving lung health and alleviation of symptom burden were top research priorities for PF stakeholders.

scholarly journals Research priorities in children requiring elective surgery for conditions affecting the lower limbs: a James Lind Alliance Priority Setting Partnership

BMJ Open ◽  
2019 ◽  
Vol 9 (12) ◽  
pp. e033233
Author(s):  
Martinique Vella-Baldacchino ◽  
Daniel C Perry ◽  
Andreas Roposch ◽  
Nicholas Nicolaou ◽  
Stephen Cooke ◽  
...  
Keyword(s):  
Priority Setting ◽  
Lower Limb ◽  
Healthcare Professionals ◽  
Research Priorities ◽  
Lower Limbs ◽  
Nominal Group ◽  
Face To Face ◽  
James Lind Alliance ◽  
Research Questions ◽  
Priority Setting Partnership

ObjectiveTo identify and prioritise research questions concerning the elective surgical management of children with conditions affecting the lower limb by engaging patients, carers and healthcare professionals.DesignA modified nominal group technique.SettingUK.Participants388 individuals (29 patients, 155 parents/carers, 204 healthcare professionals) were recruited through hospital clinics, patient charities and professional organisations and participated in the initial prioritisation survey; 234 individuals took part in the interim prioritisation survey. 33 individuals (3 patients, 9 parents/carers, 11 healthcare professionals, 7 individuals representing the project’s steering group and 3 James Lind Alliance (JLA) facilitators) attended the final face-to-face workshop to rank the top 10 research priorities.InterventionsSurveys were distributed using various media resources such as newsletters, internet messaging boards and the ‘Paediatric Lower Limb Surgery Priority Setting Partnership (PSP) website. Printed copies of the questionnaire were also made available to families in outpatient clinics.Outcome measuresSurvey results, top 10 and top 26 priority rankingsResultsThe process took 18 months to complete (July 2017–January 2019); 388 people generated 1023 questions; a total of 801 research questions were classified as true uncertainties. Following the JLA methodology, 75 uncertainties were developed from the initial 801 questions. Twenty six of those were selected through a second survey and were taken to the final face-to-face workshop where the top 10 research priorities were selected. The top10 priorities included questions on cerebral palsy, common hip conditions (ie, Perthes’ disease and developmental dysplasia of the hip) as well as rehabilitation techniques and methods to improve shared decision-making between clinicians and patients/families.ConclusionsThis is the first JLA PSP in children’s orthopaedic surgery, a particularly under-researched and underfunded area. We have identified important research topics which will guide researchers and funders and direct their efforts in future research.

scholarly journals Research priorities for lower limb amputation in patients with vascular disease

2021 ◽  
Author(s):  
David Bosanquet ◽  
Sandip Nandhra ◽  
Kitty Wong ◽  
Judith Long ◽  
Ian Chetter ◽  
...  
Keyword(s):  
Vascular Surgery ◽  
Lower Limb ◽  
Healthcare Professionals ◽  
Research Priorities ◽  
Lower Limb Amputation ◽  
Nominal Group ◽  
Phantom Limb ◽  
Limb Amputation ◽  
Specific Research ◽  
Research Questions

Introduction Lower limb amputation is a life-changing event for patients and can be associated with high mortality and morbidity rates. Research into this critical part of vascular surgery is limited. The Vascular Society of Great Britain and Ireland (VSGBI) in partnership with the James Lind Alliance (JLA) process, aimed to identify and develop key research priorities for amputation. Methods A modified JLA Priority Setting Partnership was undertaken, encompassing all vascular practice. Two separate Delphi processes to identify research topics were undertaken with healthcare professionals, patients and carers, led by the VSGBI. The priorities were then ranked by the same participants and amalgamated to produce a list for final prioritisation. The final consensus meeting was attended by patients, carers and healthcare professionals from a variety of backgrounds involved in the care of people with amputation. Using a nominal group technique, the top ten research priorities were identified. Results A total of 481 clinicians submitted 1231 research questions relating to vascular surgery in general. 63 amputation-specific research questions were combined into 5 final clinical questions. 373 patients or carers submitted 582 research questions related to vascular surgery in general. Nine amputation-specific research questions were identified after combining similar questions. Amalgamating both the clinician and patient questions, 12 questions were discussed at the final prioritisation meeting and the top 10 identified. These related to amputation prevention, supporting rehabilitation, improving clinical outcomes following amputation (preventing/treating pain including phantom limb pain and improving wound healing) and research into information provision for patients undergoing amputation. Conclusion The top 10 research priority areas in vascular amputation provide guidance for researchers, clinicians, and funders on the direction of future research questions that are important to both healthcare professionals and patients.

scholarly journals Identifying primary care patient safety research priorities in the UK: a James Lind Alliance Priority Setting Partnership

BMJ Open ◽  
2018 ◽  
Vol 8 (2) ◽  
pp. e020870 ◽  
Author(s):  
Rebecca Lauren Morris ◽  
Susan Jill Stocks ◽  
Rahul Alam ◽  
Sian Taylor ◽  
Carly Rolfe ◽  
...  
Keyword(s):  
Primary Care ◽  
Patient Safety ◽  
National Survey ◽  
Healthcare Professionals ◽  
Primary Care Patient ◽  
Research Priorities ◽  
Care Patient ◽  
Nominal Group ◽  
Safety Research ◽  
Research Questions

ObjectivesTo identify the top 10 unanswered research questions for primary care patient safety research.DesignA modified nominal group technique.SettingUK.ParticipantsAnyone with experience of primary care including: patients, carers and healthcare professionals. 341 patients and 86 healthcare professionals submitted questions.Main outcomesA top 10, and top 30, future research questions for primary care patient safety.Results443 research questions were submitted by 341 patients and 86 healthcare professionals, through a national survey. After checking for relevance and rephrasing, a total of 173 questions were collated into themes. The themes were largely focused on communication, team and system working, interfaces across primary and secondary care, medication, self-management support and technology. The questions were then prioritised through a national survey, the top 30 questions were taken forward to the final prioritisation workshop. The top 10 research questions focused on the most vulnerable in society, holistic whole-person care, safer communication and coordination between care providers, work intensity, continuity of care, suicide risk, complex care at home and confidentiality.ConclusionsThis study was the first national prioritisation exercise to identify patient and healthcare professional priorities for primary care patient safety research. The research priorities identified a range of important gaps in the existing evidence to inform everyday practice to address primary care patient safety.

scholarly journals Research priorities in advanced heart failure: James Lind alliance priority setting partnership

Open Heart ◽  
2020 ◽  
Vol 7 (1) ◽  
pp. e001258
Author(s):  
Clare J Taylor ◽  
Alyson L Huntley ◽  
John Burden ◽  
Amy Gadoud ◽  
Toto Gronlund ◽  
...  
Keyword(s):  
Heart Failure ◽  
Priority Setting ◽  
Healthcare Professionals ◽  
Research Priorities ◽  
Advanced Heart Failure ◽  
Nominal Group ◽  
James Lind Alliance ◽  
Research Questions ◽  
The Impact ◽  
Priority Setting Partnership

ObjectiveTo determine research priorities in advanced heart failure (HF) for patients, carers and healthcare professionals.MethodsPriority setting partnership using the systematic James Lind Alliance method for ranking and setting research priorities. An initial open survey of patients, carers and healthcare professionals identified respondents’ questions, which were categorised to produce a list of summary research questions; questions already answered in existing literature were removed. In a second survey of patients, carers and healthcare professionals, respondents ranked the summary research questions in order of priority. The top 25 unanswered research priorities were then considered at a face-to-face workshop using nominal group technique to agree on a ‘top 10’.Results192 respondents submitted 489 responses each containing one or more research uncertainty. Out-of-scope questions (35) were removed, and collating the responses produced 80 summary questions. Questions already answered in the literature (15) were removed. In the second survey, 65 questions were ranked by 128 respondents. The top 10 priorities were developed at a consensus meeting of stakeholders and included a focus on quality of life, psychological support, the impact on carers, role of the charity sector and managing prognostic uncertainty. Ranked priorities by physicians and patients were remarkably divergent.ConclusionsEngaging stakeholders in setting research priorities led to a novel set of research questions that might not have otherwise been considered. These priorities can be used by researchers and funders to direct future research towards the areas which matter most to people living with advanced HF.

scholarly journals Prioritization Of Research Under National Aids Control Programme In India Using Nominal Group Technique

1970 ◽  
Vol 8 (1) ◽  
pp. 20-30
Author(s):  
R Sogarwal ◽  
D Bachani
Keyword(s):  
Nominal Group Technique ◽  
Research Priorities ◽  
Control Programme ◽  
Pediatric Hiv ◽  
Nominal Group ◽  
Phase Iii ◽  
Hiv Care ◽  
Policy Makers ◽  
Research Questions ◽  
Group Technique

Introduction: During the fi rst 2 years of the fi ve year plan of India’s National AIDS Control Programme Phase-III (NACP-III; 2007-12), various interactive consultative workshops were organized in collaboration with development partners with the objective of identifying priority areas for operational research and further development of research protocols adopting mentorship approach. Methodology: This article is an attempt to present the Nominal Group Technique (NGT) which was used to identify a set of fundable and practically feasible research priorities under NACP-III specifi cally focusing on Prevention of Parent to Child Transmission (PPTCT) and Pediatric HIV Care in India. The activity was undertaken with support of UNICEF in the year 2010. A total of 110 persons participated in the consultation clustering into 37, 36 and 37 members in Group A, B and C, respectively. The participants refl ected the mix of policy makers / decision makers (8), programme managers (12), implementers (36), subject experts / researchers (28), other stakeholders (16). Results: A total of nine highest priority research questions were identifi ed by all the groups in the assigned themes. The value of Kendall’s W coeffi cient of concordance was 0.68, which shows signifi cant agreement among raters on priority research questions (chi-square=16.35; p=0.03). Conclusion: Based on our experience, we can conclude that NGT was found to be an important tool for setting research priorities that is more democratic and transparent than the traditional methods. By applying various stages of the group sessions, participants can experience the rethinking process with reference information to enhance their judgment. The results of our experience may help programme managers / policy makers to plan similar and more improved method in other element of NACP as well as other health programmes. DOI: http://dx.doi.org/10.3126/saarctb.v8i1.5888 SAARCTB 2011; 8(1): 20-30

scholarly journals Comparative effectiveness research priorities: Identifying critical gaps in evidence for clinical and health policy decision making

2009 ◽  
Vol 25 (03) ◽  
pp. 241-248 ◽  
Author(s):  
Kalipso Chalkidou ◽  
Danielle Whicher ◽  
Weslie Kary ◽  
Sean Tunis
Keyword(s):  
Coronary Artery ◽  
Comparative Effectiveness Research ◽  
Comparative Effectiveness ◽  
Group Process ◽  
Research Priorities ◽  
Decision Makers ◽  
Nominal Group ◽  
Effectiveness Research ◽  
Research Questions ◽  
Artery Disease

Background:In the debate on improving the quality and efficiency of the United States healthcare system, comparative effectiveness research is increasingly seen as a tool for reducing costs without compromising outcomes. Furthermore, the recent American Recovery and Reinvestment Act explicitly describes a prioritization function for establishing a comparative effectiveness research agenda. However, how such a function, in terms of methods and process, would go about identifying the most important priorities warranting further research has received little attention.Objectives:This study describes an Agency for Healthcare Research and Quality-funded pilot project to translate one current comparative effectiveness review into a prioritized list of evidence gaps and research questions reflecting the views of the healthcare decision makers involved in the pilot.Methods:To create a prioritized research agenda, we developed an interactive nominal group process that relied on a multistakeholder workgroup scoring a list of research questions on the management of coronary artery disease.Results:According to the group, the areas of greatest uncertainty regarding the management of coronary artery disease are the comparative effectiveness of medical therapy versus percutaneous coronary interventions versus coronary artery bypass grafting for different patient subgroups; the impact of diagnostic testing; and the most effective method of developing performance measures for providers.Conclusions:By applying our nominal group process, we were able to create a list of research priorities for healthcare decision makers. Future research should focus on refining this process because determining research priorities is essential to the success of developing an infrastructure for comparative effectiveness research.

scholarly journals Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis

2020 ◽  
Author(s):  
Anouk Verwoerd ◽  
Wineke Armbrust ◽  
Katherine Cowan ◽  
Lotte van den Berg ◽  
Joke de Boer ◽  
...  
Keyword(s):  
Juvenile Idiopathic Arthritis ◽  
Focus Groups ◽  
Research Agenda ◽  
Healthcare Professionals ◽  
Treatment Strategies ◽  
Research Priorities ◽  
Nationwide Survey ◽  
James Lind Alliance ◽  
Research Questions ◽  
Personalised Treatment

Abstract Background Involving the end-users of scientific research (patients, carers and clinicians) in setting research priorities is important to formulate research questions that truly make a difference and are in tune with the needs of patients. We therefore aimed to generate a national research agenda for Juvenile Idiopathic Arthritis (JIA) together with patients, their caregivers and healthcare professionals through conducting a nationwide survey among these stakeholders.Methods The James Lind Alliance method was used, tailored with additional focus groups held to involve younger patients. First, research questions were gathered through an online and hardcopy survey. The received questions that were in scope were summarised and a literature search was performed to verify that questions were unanswered. Questions were ranked in the interim survey, and the final top 10 was chosen during a prioritisation workshop. Results Two hundred and seventy-eight respondents submitted 604 questions, of which 519 were in scope. Of these 604 questions, 81 were generated in the focus groups with younger children. The questions were summarised into 53 summary questions. An evidence checking process verified that all questions were unanswered. A total of 303 respondents prioritised the questions in the interim survey. Focus groups with children generated a top 5 of their most important questions. Combining this top 5 with the top 10s of patients, carers, and clinicians led to a top 21. Out of these, the top 10 research priorities were chosen during a final workshop. Research into pain and fatigue, personalised treatment strategies and aetiology were ranked high in the Top 10.Conclusions Through this study, the top 10 research priorities for JIA of patients, their caregivers and clinicians were identified to inform researchers and research funders of the research topics that matter most to them. The top priority involves the treatment and mechanisms behind persisting pain and fatigue when the disease is in remission.

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 Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis

2020 ◽  
Author(s):  
Anouk Verwoerd ◽  
Wineke Armbrust ◽  
Katherine Cowan ◽  
Lotte van den Berg ◽  
Joke de Boer ◽  
...  
Keyword(s):  
Juvenile Idiopathic Arthritis ◽  
Focus Groups ◽  
Research Agenda ◽  
Healthcare Professionals ◽  
Treatment Strategies ◽  
Research Priorities ◽  
Nationwide Survey ◽  
James Lind Alliance ◽  
Research Questions ◽  
Personalised Treatment

Abstract Background: Involving the end-users of scientific research (patients, carers and clinicians) in setting research priorities is important to formulate research questions that truly make a difference and are in tune with the needs of patients. We therefore aimed to generate a national research agenda for Juvenile Idiopathic Arthritis (JIA) together with patients, their caregivers and healthcare professionals through conducting a nationwide survey among these stakeholders.Methods: The James Lind Alliance method was used, tailored with additional focus groups held to involve younger patients. First, research questions were gathered through an online and hardcopy survey. The received questions that were in scope were summarised and a literature search was performed to verify that questions were unanswered. Questions were ranked in the interim survey, and the final top 10 was chosen during a prioritisation workshop.Results: Two hundred and seventy-eight respondents submitted 604 questions, of which 519 were in scope. Of these 604 questions, 81 were generated in the focus groups with younger children. The questions were summarised into 53 summary questions. An evidence checking process verified that all questions were unanswered. A total of 303 respondents prioritised the questions in the interim survey. Focus groups with children generated a top 5 of their most important questions. Combining this top 5 with the top 10 s of patients, carers, and clinicians led to a top 21. Out of these, the top 10 research priorities were chosen during a final workshop. Research into pain and fatigue, personalised treatment strategies and aetiology were ranked high in the Top 10.Conclusions: Through this study, the top 10 research priorities for JIA of patients, their caregivers and clinicians were identified to inform researchers and research funders of the research topics that matter most to them. The top priority involves the treatment and mechanisms behind persisting pain and fatigue when the disease is in remission.

scholarly journals A modified Delphi process to establish research priorities in hernia surgery

Hernia ◽  
2021 ◽  
Author(s):  
D. S. G. Scrimgeour ◽  
M. Allan ◽  
S. R. Knight ◽  
B. East ◽  
S. Blackwell ◽  
...  
Keyword(s):  
Phase I ◽  
Abdominal Wall ◽  
Phase Ii ◽  
Healthcare Professionals ◽  
Research Priorities ◽  
Abdominal Wall Hernia ◽  
Hernia Surgery ◽  
High Quality ◽  
Modified Delphi ◽  
Research Questions

Abstract Background Abdominal wall hernia repair is one of the most commonly performed surgical procedures worldwide, yet despite this, there remains a lack of high-quality evidence to support best management. The aim of the study was to use a modified Delphi process to determine future research priorities in this field. Methods Stakeholders were invited by email, using British Hernia Society membership details or Twitter, to submit individual research questions via an online survey. In addition, questions obtained from a patient focus group (PFG) were collated to form Phase I. Two rounds of prioritization by stakeholders (phases II and III) were then completed to determine a final list of research questions. All questions were analyzed on an anonymized basis. Results A total of 266 questions, 19 from the PFG, were submitted by 113 stakeholders in Phase I. Of these, 64 questions were taken forward for prioritization in Phase II, which was completed by 107 stakeholders. Following Phase II analysis, 97 stakeholders prioritized 36 questions in Phase III. This resulted in a final list of 14 research questions, 3 of which were from the PFG. Stakeholders included patients and healthcare professionals (consultant surgeons, trainee surgeons and other multidisciplinary members) from over 27 countries during the 3 phases. Conclusion The study has identified 14 key research priorities pertaining to abdominal wall hernia surgery. Uniquely, these priorities have been determined from participation by both healthcare professionals and patients. These priorities should now be addressed by well-designed, high-quality international collaborative research.

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