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 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 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.

scholarly journals Identifying the top research priorities in postmastectomy breast cancer reconstruction: a James Lind Alliance priority setting partnership

BMJ Open ◽  
2021 ◽  
Vol 11 (8) ◽  
pp. e047589
Author(s):  
Toni Zhong ◽  
Anisha Mahajan ◽  
Katherine Cowan ◽  
Claire Temple-Oberle ◽  
Geoff Porter ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Priority Setting ◽  
Research Priorities ◽  
Cancer Recurrence ◽  
Consensus Meeting ◽  
Nominal Group ◽  
James Lind Alliance ◽  
Research Questions ◽  
Treatment Safety ◽  
Priority Setting Partnership

BackgroundMajor improvements in breast cancer treatment in the last decade include advancements in postmastectomy breast reconstruction (PMBR). Unfortunately, the studies in PMBR are primarily researcher or industry led with minimal input from patients and caregivers. The aim of this study is to use the James Lind Alliance (JLA) approach to bring together the patients, caregivers and clinicians in a priority setting partnership to identify the most important unanswered research questions in PMBR.MethodsThe JLA priority setting methodology involved four key stages: gathering research questions on PMBR from patients, caregivers and clinicians; checking these research questions against existing evidence; interim prioritisation and a final consensus meeting to determine the top 10 unanswered research questions using the modified nominal group methodology.ResultsIn stage 1, 3168 research questions were submitted from 713 respondents across Canada, of which 73% of the participants were patients or caregivers. Stage 2 confirmed that there were a total of 48 unique unanswered questions. In stage three, 488 individuals completed the interim prioritisation survey and the top 25 questions were taken to a final consensus meeting. In the final stage, the top 10 unanswered research questions were determined. They cover a breadth of topics including personalised surgical treatment, safety of implants and newer techniques, access to PMBR, breast cancer recurrence and rehabilitation.InterpretationIdentification of the top 10 unanswered research questions is an important first step to generating relevant and impactful research that will ultimately improve the PMBR experience for patients with breast cancer.

scholarly journals Research priorities for the management of broken bones of the upper limb in people over 50: a UK priority setting partnership with the James Lind Alliance

BMJ Open ◽  
2019 ◽  
Vol 9 (12) ◽  
pp. e030028 ◽  
Author(s):  
Warren J Sheehan ◽  
Mark A Williams ◽  
Zoe Paskins ◽  
Matthew L Costa ◽  
Miguel Antonio Fernandez ◽  
...  
Keyword(s):  
Upper Limb ◽  
Priority Setting ◽  
Healthcare Professionals ◽  
Research Priorities ◽  
Broken Bones ◽  
Research Areas ◽  
James Lind Alliance ◽  
Research Questions ◽  
Multi Stakeholder ◽  
Priority Setting Partnership

ObjectiveTo determine research priorities for the management of broken bones of the upper limb in people over 50, which represent the shared priorities of patients, their families, carers and healthcare professionals.Design/settingA national (UK) research priority setting partnership.ParticipantsPeople aged 50 and over who have experienced a fracture of the upper limb, carers involved in their care, family and friends of patients, healthcare professionals involved in the treatment of these patients.MethodsUsing a multiphase methodology in partnership with the James Lind Alliance over 15 months (September 2017 to December 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 already been answered. A second national survey asked respondents to prioritise the research questions. A final shortlist of 25 questions was taken to a multi-stakeholder workshop where a consensus was reached on the top 10 priorities.ResultsThere were 1898 original uncertainties submitted by 328 respondents to the first survey. These original uncertainties were refined into 51 research questions of which 50 were judged to be true uncertainties following a review of the research evidence. There were 209 respondents to the second (interim prioritisation) survey. The top 10 priorities encompass a broad range of uncertainties in management and rehabilitation of upper limb fractures.ConclusionsThe top 10 UK research priorities highlight uncertainties in how we assess outcomes, provide information, achieve pain control, rationalise surgical intervention, optimise rehabilitation and provide psychological support. The breadth of these research areas highlights the value of this methodology. This work should help to steer research in this area for the next 5–10 years and the challenge for researchers now is to refine and deliver answers to these research priorities.

scholarly journals Identifying research priorities in cardiac surgery: a report from the James Lind Alliance Priority Setting Partnership in adult heart surgery

BMJ Open ◽  
2020 ◽  
Vol 10 (9) ◽  
pp. e038001
Author(s):  
Florence Y Lai ◽  
Riccardo G Abbasciano ◽  
Bethany Tabberer ◽  
Tracy Kumar ◽  
Gavin J Murphy
Keyword(s):  
Cardiac Surgery ◽  
Priority Setting ◽  
Heart Surgery ◽  
Healthcare Professionals ◽  
Research Priorities ◽  
Stakeholder Groups ◽  
James Lind Alliance ◽  
Research Questions ◽  
Initial Survey ◽  
Priority Setting Partnership

ObjectiveTo identify research priorities that address the needs of people affected by cardiac surgery and those who support and care for them.DesignJames Lind Alliance (JLA) process—two surveys and a consensus workshop guided by an independent JLA adviser.SettingThe UK with international participation.ParticipantsThree stakeholder groups—heart surgery patients, carers and healthcare professionals involved in care delivery.MethodsThe initial survey was set to collect potential research questions in cardiac surgery as identified by stakeholders. Submitted questions were summarised into indicative questions. The existing evidence was searched to verify that these indicative questions had not been answered. In the second survey, stakeholders then voted for their top 10 from the list of unanswered questions. The top voted questions were taken forward for final ranking in a workshop.ResultsIn the initial survey, 629 respondents (28% patients/carers, 62% healthcare professionals) submitted 1082 potential questions. Of these, 797 in-scope questions were summarised into 49 indicative questions and of which 45 had not been answered by existing research. In the second survey, 492 respondents (43% patients/carers, 49% healthcare professionals) cast their votes with the top 12 from each of the three stakeholder groups totalling 21 questions advancing to the final priority setting workshop. The workshop attended by 25 delegates (10 patients/carers and 15 healthcare professionals) agreed on the top 10 research questions including long-term outcomes (quality of life), and aspects from preoperative personalised care (prehabilitation, frailty, comorbidities), intraoperative management (minimally invasive techniques), to prevention and management of postoperative complications (organ injury, atrial fibrillation, infection).ConclusionsThis Priority Setting Partnership (PSP) identified the priorities and unmet needs of patients and clinicians in cardiac surgery. The next step is to disseminate and implement the PSP results to ensure that these priorities shape future research and improve clinical services.

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 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 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 Research priorities for the management of complex fractures: a UK priority setting partnership with the James Lind Alliance

BMJ Open ◽  
2021 ◽  
Vol 11 (11) ◽  
pp. e057198
Author(s):  
Christopher Patrick Bretherton ◽  
Henry A Claireaux ◽  
Jonathan Gower ◽  
Shan Martin ◽  
Angela Thornhill ◽  
...  
Keyword(s):  
National Survey ◽  
Priority Setting ◽  
Healthcare Professionals ◽  
Research Priorities ◽  
Complex Fracture ◽  
Complex Fractures ◽  
James Lind Alliance ◽  
Initial Survey ◽  
Life Roles ◽  
Priority Setting Partnership

ObjectiveTo determine research priorities for the management of complex fractures, which represent the shared priorities of patients, their families, carers and healthcare professionals.Design/settingA national (UK) research priority setting partnership.ParticipantsPeople who have experienced a complex fracture, their carers and relatives, and relevant healthcare professionals and clinical academics involved in treating patients with complex fractures. The scope includes open fractures, fractures to joints broken into multiple pieces, multiple concomitant fractures and fractures involving the pelvis and acetabulum.MethodsA multiphase priority setting exercise was conducted in partnership with the James Lind Alliance over 21 months (October 2019 to June 2021). A national survey asked respondents to submit their research uncertainties which were then combined into several indicative questions. The existing evidence was searched to ensure that the questions had not already been sufficiently answered. A second national survey asked respondents to prioritise the research questions. A final shortlist of 18 questions was taken to a stakeholder workshop, where a consensus was reached on the top 10 priorities.ResultsA total of 532 uncertainties, submitted by 158 respondents (including 33 patients/carers) were received during the initial survey. These were refined into 58 unique indicative questions, of which all 58 were judged to be true uncertainties after review of the existing evidence. 136 people (including 56 patients/carers) responded to the interim prioritisation survey and 18 questions were taken to a final consensus workshop between patients, carers and healthcare professionals. At the final workshop, a consensus was reached for the ranking of the top 10 questions.ConclusionsThe top 10 research priorities for complex fracture include questions regarding rehabilitation, complications, psychological support and return to life-roles. These shared priorities will now be used to guide funders and teams wishing to research complex fractures over the coming decade.

scholarly journals Joint production of research priorities to improve the lives of those with childhood onset conditions that impair learning: the James Lind Alliance Priority Setting Partnership for ‘learning difficulties’

BMJ Open ◽  
2019 ◽  
Vol 9 (10) ◽  
pp. e028780
Author(s):  
Ai Keow Lim ◽  
Sinead Rhodes ◽  
Katherine Cowan ◽  
Anne O'Hare
Keyword(s):  
Young People ◽  
Priority Setting ◽  
Learning Difficulties ◽  
Third Sector ◽  
Research Priorities ◽  
Joint Production ◽  
Childhood Onset ◽  
James Lind Alliance ◽  
Research Questions ◽  
Priority Setting Partnership

ObjectivesTo engage children and young people with conditions that impair learning, their parents/carers and the health, education, social work and third sector professionals to identify and prioritise research questions for learning difficulties.DesignProspective surveys and consensus meeting guided by methods advocated by the James Lind Alliance.SettingScotland.MethodsThe Priority Setting Partnership came together through discussion and collaboration between the University of Edinburgh, Scottish charity The Salvesen Mindroom Centre and partners in the National Health Service, education services and the third sector. A steering group was established. Charity and professional organisations were recruited. Suggested questions were gathered in an open survey and from research recommendations by the National Institute for Health and Care Excellence and Scottish Intercollegiate Guidelines Network Guidance. Suggested questions and recommendations were summarised into 40 indicative research questions. These indicative questions were verified as uncertainties from research evidence. Respondents each nominated up to 10 questions as research priorities in an interim survey. The 25 highest-ranked questions from the interim survey were prioritised at the final priority setting workshop.Participants367 people submitted suggestions (29 individuals affected by learning difficulties, 147 parents/carers and 191 professionals). 361 people participated in the interim prioritisation (41 individuals, 125 parents/carers and 195 professionals). 25 took part in the final workshop (5 young people, 6 parents and 14 professionals).ResultsTop three research priorities related to (1) upskilling education professionals, (2) best education and community environment and (3) multidisciplinary practice and working with parents. Top 10 included best early interventions, upskilling health, social and third sector professionals, support for families, identifying early signs and symptoms, effective assessments and strategies against stigma and bullying and to live independent lives.ConclusionsResults will now be a resource for researchers and funders to understand and resolve learning difficulties and improve the lives of those affected with childhood onset conditions that result in learning difficulties.

Sign in / Sign up

Export Citation Format

Share Document