scholarly journals Participatory Research: A Priority Setting Partnership for Chronic Musculoskeletal Pain in Denmark

2021 ◽  
Author(s):  
Kristian Damgaard Lyng ◽  
Jesper Bie Larsen ◽  
Kathryn Birnie ◽  
Jennifer Stinson ◽  
Morten Sebastian Hoegh ◽  
...  
Keyword(s):  
Musculoskeletal Pain ◽  
Priority Setting ◽  
Public Involvement ◽  
Research Priorities ◽  
Patient And Public Involvement ◽  
Chronic Musculoskeletal Pain ◽  
Pain Patient ◽  
Specific Research ◽  
Research Questions ◽  
Priority Setting Partnership

Background Patient and stakeholder engagements in research have increasingly gained attention in healthcare and healthcare-related research. A common and rigorous approach to establish research priorities based on input from people and stakeholders is the James Lind Alliance Priority Setting Partnership (JLA-PSP). The aim of this study was to establish research priorities for chronic musculoskeletal (MSK) pain by engaging with humans living with chronic MSK pain, relatives to humans living with chronic MSK pain, healthcare professionals (HCP), and researchers working with chronic MSK pain. Methods This JLA-PSP included a nation-wide survey in Denmark, an interim prioritisation, and an online consensus building workshop. The information gained from this was the basis for developing the final list of specific research priorities within chronic MSK pain. Results In the initial survey, 1010 respondents (91% people living with chronic MSK pain/relatives, 9% HCPs/researchers) submitted 3121 potential questions. These were summarised into 19 main themes and 36 sub-themes. In the interim prioritisation exercise, 51% people living with pain/relatives and 49% HCPs/researchers reduced the list to 33 research questions prior to the final priority setting workshop. 23 participants attended the online workshop (12 people/relatives, 10 HCPs, and 1 researcher) who reached consensus for the most important research priorities after two rounds of discussion of each question. Conclusion This study identified several specific research questions generated by people living with chronic MSK pain, relatives, HCPs, and researchers. The stakeholders proposed prioritization of the healthcare system's ability to support patients, focus on developing coherent pathways between sectors and education for both patients and HCP. These research questions can form the basis for future studies, funders, and be used to align research with end-users priorities Keywords Chronic musculoskeletal pain, patient and public involvement, research 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 Scoping review of priority setting of research topics for musculoskeletal conditions

BMJ Open ◽  
2018 ◽  
Vol 8 (12) ◽  
pp. e023962 ◽  
Author(s):  
Allison M Bourne ◽  
Renea V Johnston ◽  
Sheila Cyril ◽  
Andrew M Briggs ◽  
Ornella Clavisi ◽  
...  
Keyword(s):  
Scoping Review ◽  
Priority Setting ◽  
Research Priorities ◽  
Inclusion Criteria ◽  
Research Topics ◽  
Specific Research ◽  
Musculoskeletal Conditions ◽  
Systems Research ◽  
Research Questions ◽  
Specific Implementation

ObjectiveDescribe research methods used in priority-setting exercises for musculoskeletal conditions and synthesise the priorities identified.DesignScoping review.Setting and populationStudies that elicited the research priorities of patients/consumers, clinicians, researchers, policy-makers and/or funders for any musculoskeletal condition were included.Methods and analysisWe searched MEDLINE and EMBASE from inception to November 2017 and the James Lind Alliance top 10 priorities, Cochrane Priority Setting Methods Group, and Cochrane Musculoskeletal and Back Groups review priority lists. The reported methods and research topics/questions identified were extracted, and a descriptive synthesis conducted.ResultsForty-nine articles fulfilled our inclusion criteria. Methodologies and stakeholders varied widely (26 included a mix of clinicians, consumers and others, 16 included only clinicians, 6 included only consumers or patients and in 1 participants were unclear). Only two (4%) reported any explicit inclusion criteria for priorities. We identified 294 broad research priorities from 37 articles and 246 specific research questions from 17 articles, although only four (24%) of the latter listed questions in an actionable format. Research priorities for osteoarthritis were identified most often (n=7), followed by rheumatoid arthritis (n=4), osteoporosis (n=4) and back pain (n=4). Nearly half of both broad and specific research priorities were focused on treatment interventions (n=116 and 111, respectively), while few were economic (n=8, 2.7% broad and n=1, 0.4% specific), implementation (n=6, 2% broad and n=4, 1.6% specific) or health services and systems research (n=15, 5.1% broad and n=9, 3.7% specific) priorities.ConclusionsWhile many research priority-setting studies in the musculoskeletal field have been performed, methodological limitations and lack of actionable research questions limit their usefulness. Future studies should ensure they conform to good priority-setting practice to ensure that the generated priorities are of maximum value.PROSPERO registration numberCRD42017059250.

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 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 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.

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 UK Research Priorities for Electronic Cigarettes: A James Lind Alliance Priority Setting Partnership

2020 ◽  
Vol 17 (22) ◽  
pp. 8500
Author(s):  
Abby Hunter ◽  
Louise Ross ◽  
Toto Gronlund ◽  
Sue Cooper
Keyword(s):  
Priority Setting ◽  
Electronic Cigarettes ◽  
Research Priorities ◽  
Electronic Cigarette ◽  
Future Research ◽  
James Lind Alliance ◽  
Research Questions ◽  
The Uk ◽  
Priority Setting Partnership ◽  
Insight Into

This study aimed to bring together people who smoke or vape, people who do not smoke and healthcare professionals to identify and agree priorities for electronic cigarette research in the UK. We carried out a priority setting partnership, guided by the methodology developed by the James Lind Alliance involving five key stages: initiation, consultation, collation, prioritisation and dissemination. A total of 765 people submitted 1887 questions that they wanted answered by research. Questions were organised into themes, merged and rewritten as summary questions, with 52 unique questions going forward to the prioritisation survey. Participants then ranked their top 10 questions. Following this ranking exercise, the top 26 were identified by selecting the most frequently prioritised questions adjusting for representative stakeholder group. These were put forward for discussion in the final prioritisation workshop, whereby the top 10 electronic cigarette research questions were agreed. The list of priorities identified will be of interest to researchers and funders of electronic cigarette research and will hopefully direct future research and funding calls. These priorities provide insight into the questions that matter to people who are using or concerned about e-cigarettes, including frontline professionals.

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 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 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.

Sign in / Sign up

Export Citation Format

Share Document