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ObjectiveTo summarise study descriptions of the James Lind Alliance (JLA) approach to the priority setting partnership (PSP) process and how this process is used to identify uncertainties and to develop lists of top 10 priorities.DesignScoping review.Data sourcesThe Embase, Medline (Ovid), PubMed, CINAHL and the Cochrane Library as of October 2018.Study selectionAll studies reporting the use of JLA process steps and the development of a list of top 10 priorities, with adult participants aged 18 years.Data extractionA data extraction sheet was created to collect demographic details, study aims, sample and patient group details, PSP details (eg, stakeholders), lists of top 10 priorities, descriptions of JLA facilitator roles and the PSP stages followed. Individual and comparative appraisals were discussed among the scoping review authors until agreement was reached.ResultsDatabase searches yielded 431 potentially relevant studies published in 2010–2018, of which 37 met the inclusion criteria. JLA process participants were patients, carers and clinicians, aged 18 years, who had experience with the study-relevant diagnoses. All studies reported having a steering group, although partners and stakeholders were described differently across studies. The number of JLA PSP process steps varied from four to eight. Uncertainties were typically collected via an online survey hosted on, or linked to, the PSP website. The number of submitted uncertainties varied across studies, from 323 submitted by 58 participants to 8227 submitted by 2587 participants.ConclusionsJLA-based PSP makes a useful contribution to identifying research questions. Through this process, patients, carers and clinicians work together to identify and prioritise unanswered uncertainties. However, representation of those with different health conditions depends on their having the capacity and resources to participate. No studies reported difficulties in developing their top 10 priorities.

A rapid review is a form of evidence synthesis considered a resource-efficient alternative to the conventional systematic review. Despite a dramatic rise in the number of rapid reviews commissioned and conducted in response to the coronavirus disease 2019 pandemic, published evidence on the optimal methods of planning, doing, and sharing the results of these reviews is lacking. The Priority III study aimed to identify the top 10 unanswered questions on rapid review methodology to be addressed by future research. A modified James Lind Alliance Priority Setting Partnership approach was adopted. This approach used two online surveys and a virtual prioritization workshop with patients and the public, reviewers, researchers, clinicians, policymakers, and funders to identify and prioritize unanswered questions. Patients and the public, researchers, reviewers, clinicians, policymakers, and funders identified and prioritized the top 10 unanswered research questions about rapid review methodology. Priorities were identified throughout the entire review process, from stakeholder involvement and formulating the question, to the methods of a systematic review that are appropriate to use, through to the dissemination of results. The results of the Priority III study will inform the future research agenda on rapid review methodology. We hope this will enhance the quality of evidence produced by rapid reviews, which will ultimately inform decision-making in the context of healthcare. [Display omitted]

Research priority-setting supports efficient use of resources and strengthens the involvement of midwifery for high-quality, equitable maternity care. In Saudi Arabia, a recent transformation has expanded the midwifery role. However, no national stakeholder-driven midwifery research agenda has been developed. Therefore, the aim of the study is to identify and set midwifery research priorities for health care services in Saudi Arabia using a modified priority-setting partnership approach. A mixed-methods design was utilized guided by the James Lind Alliance Priority-Setting Partnership framework. A steering group comprising clinicians and mothers codesigned the process. Purposive sampling was used to recruit midwives, nurses, obstetricians, and mothers from 10 out of the 13 Saudi regions. Individual interviews generated research uncertainties, which were analyzed using conventional inductive content analysis. A long list of topics were checked against existing evidence, then refined through interim ranking by the steering group. In a consensus workshop, clinicians and mothers used a structured nominal group technique and scoring system to reach consensus on the top-10 priorities. A total of 35 (27 clinicians and eight mothers) participated in the interviews. The analysis generated 230 research uncertainties, summarized into 33 topics, which were then shortened to 19. Through interim ranking and consensus, 10 research priorities were agreed on: (1) midwifery workforce and professional recognition, (2) maternal health and care practices, (3) neonatal and newborn care, (4) midwifery education and competency development, (5) cultural and community context, (6) special populations and high-risk groups, (7) integration of technology and innovation, (8) stakeholder and patient engagement in research, (9) health system and policy, and (10) emerging research directions. To our knowledge, this is the first national stakeholder-driven midwifery research priority agenda in Saudi Arabia. The identified priorities offer a comprehensive and clear road map for researchers, investors, educators, and policymakers to align future midwifery research with areas of greatest perceived need and impact.

Purpose To use robust consensus methods with individuals with lived breast cancer experience to agree the top 10 research priorities to improve information and support for patients undergoing breast cancer surgery in the UK. Methods Research uncertainties related to information and support for breast cancer surgery submitted by patients and carers were analysed thematically to generate summary questions for inclusion in an online Delphi survey. Individuals with lived breast cancer experience completed two Delphi rounds including feedback in which they selected their top 10 research priorities from the list provided. The most highly ranked priorities from the survey were discussed at an in-person prioritisation workshop at which the final top 10 was agreed. Results The 543 uncertainties submitted by 156 patients/carers were categorised into 63 summary questions for inclusion in the Delphi survey. Of the 237 individuals completing Round 1, 190 (80.2%) participated in Round 2. The top 25 survey questions were carried forward for discussion at the in-person prioritisation workshop at which 17 participants from across the UK agreed the final top 10 research priorities. Key themes included ensuring patients were fully informed about all treatment options and given balanced, tailored information to support informed decision-making and empower their recovery. Equity of access to treatments including contralateral mastectomy for symmetry was also considered a research priority. Conclusion This process has identified the top 10 research priorities to improve information and support for patients undergoing breast cancer surgery. Work is now needed to develop studies to address these important questions.

Background Despite the problem of inadequate recruitment to randomised trials, there is little evidence to guide researchers on decisions about how people are effectively recruited to take part in trials. The PRioRiTy study aimed to identify and prioritise important unanswered trial recruitment questions for research. The PRioRiTy study - Priority Setting Partnership (PSP) included members of the public approached to take part in a randomised trial or who have represented participants on randomised trial steering committees, health professionals and research staff with experience of recruiting to randomised trials, people who have designed, conducted, analysed or reported on randomised trials and people with experience of randomised trials methodology. Methods This partnership was aided by the James Lind Alliance and involved eight stages: (i) identifying a unique, relevant prioritisation area within trial methodology; (ii) establishing a steering group (iii) identifying and engaging with partners and stakeholders; (iv) formulating an initial list of uncertainties; (v) collating the uncertainties into research questions; (vi) confirming that the questions for research are a current recruitment challenge; (vii) shortlisting questions and (viii) final prioritisation through a face-to-face workshop. Results A total of 790 survey respondents yielded 1693 open-text answers to 6 questions, from which 1880 potential questions for research were identified. After merging duplicates, the number of questions was reduced to 496. Questions were combined further, and those that were submitted by fewer than 15 people and/or fewer than 6 of the 7 stakeholder groups were excluded from the next round of prioritisation resulting in 31 unique questions for research. All 31 questions were confirmed as being unanswered after checking relevant, up-to-date research evidence. The 10 highest priority questions were ranked at a face-to-face workshop. The number 1 ranked question was “How can randomised trials become part of routine care and best utilise current clinical care pathways?” The top 10 research questions can be viewed at www.priorityresearch.ie . Conclusion The prioritised questions call for a collective focus on normalising trials as part of clinical care, enhancing communication, addressing barriers, enablers and motivators around participation and exploring greater public involvement in the research process.

Plain English summary There is some evidence that there is a mismatch between what patients and health professionals want to see researched and the research that is actually done. The James Lind Alliance (JLA) research Priority Setting Partnerships (PSPs) were created to address this mismatch. Between 2007 and 2014, JLA partnerships of patients, carers and health professionals agreed on important treatment research questions (priorities) in a range of health conditions, such as Type 1 diabetes, eczema and stroke. We were interested in how much these JLA PSP priorities were similar to treatments undergoing evaluation and research over the same time span. We identified the treatments described in all the JLA PSP research priority lists and compared these to the treatments described in a group of research studies (randomly selected) registered publically. The priorities identified by JLA PSPs emphasised the importance of non-drug treatment research, compared to the research actually being done over the same time period, which mostly involved evaluations of drugs. These findings suggest that the research community should make greater efforts to address issues of importance to users of research, such as patients and healthcare professionals. Background Comparisons of treatment research priorities identified by patients and clinicians with research actually being done by researchers are very rare. One of the best known of these comparisons (Tallon et al. Relation between agendas of the research community and the research consumer 355:2037–40, 2000) revealed important mismatches in priorities in the assessment of treatments for osteoarthritis of the knee: researchers preferenced drug trials, patients and clinicians prioritised non-drug treatments. These findings were an important stimulus in creating the James Lind Alliance (JLA). The JLA supports research Priority Setting Partnerships (PSPs) of patients, carers and clinicians, who are actively involved in all aspects of the process, to develop shared treatment research priorities. We have compared the types of treatments (interventions) prioritised for evaluation by JLA PSPs with those being studied in samples of clinical trials being done over the same period. Objective We used treatment research priorities generated by JLA PSPs to assess whether, on average, treatments prioritised by patients and clinicians differ importantly from those being studied by researchers. Methods We identified treatments mentioned in prioritised research questions generated by the first 14 JLA PSPs. We compared these treatments with those assessed in random samples of commercial and non-commercial clinical trials recruiting in the UK over the same period, which we identified using WHO’s International Clinical Trials Registry Platform. Results We found marked differences between the proportions of different types of treatments proposed by patients, carers and clinicians and those currently being evaluated by researchers. In JLA PSPs, drugs accounted for only 18 % (23/126) of the treatments mentioned in priorities; in registered non-commercial trials, drugs accounted for 37 % (397/1069) of the treatments mentioned; and in registered commercial trials, drugs accounted for 86 % (689/798) of the treatments mentioned. Discussion Our findings confirm the mismatch first described by Tallon et al. 15 years ago. On average, drug trials are being preferenced by researchers, and non-drug treatments are preferred by patients, carers and clinicians. This general finding should be reflected in more specific assessments of the extent to which research is addressing priorities identified by the patient and clinician end users of research. It also suggests that the research culture is slow to change in regard to how important and relevant treatment research questions are identified and prioritised.

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.

Background Colorectal cancer (CRC) is the third most frequent cause of cancer death in the word. Which aspects of research into CRC should be accorded the highest priority remains unclear, because relevant stakeholders, such as patients, nurses, and physicians, played hardly any part in the development of research projects. The goal in forming the CRC Priority-Setting Partnership (PSP) was to bring all relevant stakeholders together to identify and prioritize unresolved research questions regarding the diagnosis, treatment, and follow-up of CRC. Methods The CRC PSP worked in cooperation with the British James Lind Alliance. An initial nationwide survey was conducted, and evidence uncertainties were collected, categorized, summarized, and compared with available evidence from the literature. The as-yet unresolved questions were (provisionally) ranked in a second national wide survey, and at a concluding consensus workshop all stakeholders came together to finalize the rankings in a nominal group process and compile a top 10 list. Results In the first survey (34% patients, 51% healthcare professionals, 15% unknown), 1102 submissions were made. After exclusion of duplicates and previously resolved questions, 66 topics were then ranked in the second survey (56% patients, 39% healthcare professionals, 5% unknown). This interim ranking process revealed distinct differences between relatives and healthcare professionals. The final top 10 list compiled at the consensus workshop covers a wide area of research topics. Conclusion All relevant stakeholders in the CRC PSP worked together to identify and prioritize the top 10 evidence uncertainties. The results give researchers and funding bodies the opportunity to address the most patient-relevant research projects. It is the first detailed description of a PSP in Germany, and the first PSP on CRC care worldwide.

Defining research priorities in a specialty as broad as emergency medicine is a significant challenge. In order to fund and complete the most important research projects, it is imperative that we identify topics that are important to all clinicians, society and to our patients. We have undertaken a priority setting partnership to establish the most important questions facing emergency medicine. The top 10 questions reached through a consensus process are discussed.

Background Typically, researchers and clinicians determine the agenda in sarcoma research. However, patient involvement can have a meaningful impact on research. Therefore, the Patient-Powered Research Network (PPRN) of the Sarcoma Patient Advocacy Global Network (SPAGN) set up a Priority Setting Partnership (PSP). The primary objective of this partnership is to identify priorities for research and patient advocacy topics. Methods In the first phase of this PSP, including 264 sarcoma patients and carers from all over the world, 23 research topics regarding sarcomas and 15 patient advocacy topics were identified using an online survey. In the second phase, participants were asked to fill in a top five and a top three of research and patient advocacy topics, respectively. Additionally, sociodemographic characteristics and sarcoma characteristics were collected. Social media channels, local national patient advocacy groups and the SPAGN website were used to distribute the survey. Results In total, 671 patients (75%) and carers (25%) participated in this survey. The five highest ranked research topics were related to causes of sarcoma (43%), prognosis and risk of recurrence (40%), specific subtypes of sarcoma (33%), the role of immunotherapy, targeted therapy and combined therapy (30%), and hereditary aspects (30%). The three highest ranked patient advocacy topics were improving the diagnostic process of sarcoma (39%), access to tumor DNA analysis (37%) and establishing an international sarcoma registry (37%). Conclusions This sarcoma PSP has identified priorities for research and patient advocacy, offering guidance for researchers, assisting funding agencies with assessing project relevance and empowering patient advocates to represent the needs of patients and carers.