Search

AbstractPurposeMaterials and methodsResultsConclusions\nIMPLICATIONS FOR REHABILITATIONPrioritisation exercises seek out what matters to key stakeholders to inform the planning of research. Social media platforms are potentially useful data sources. The aim was to examine the content of tweets, short messages containing text and pictures, to ascertain the priorities of Twitter users regarding stroke recovery.Content analysis of Twitter was conducted. An electronic search used the identifiers: #strokesurvivor and #strokerecovery. Tweets spanning four weeks from January 2021 were analysed.There were 1361 tweets extracted and 486 analysed following exclusion of duplicates and unrelated material. Six themes were uncovered (n = number of tweets): maintaining motivation and positivity (153); sharing of resources (146); raising awareness of stroke (74); symptomatic aspects of recovery (39); experience of rehabilitation (63); and concerns about Covid-19 (17).Despite the brevity of tweets, a rich picture arose. A key limitation was lack of biographical data about Twitter users. Recommendations about topics requiring attention from stroke researchers, clinicians and policy makers are: management of psychological problems; public perception of stroke; rehabilitation considerations including treatment burden, person-centred care and equality of care; symptom management including fatigue and aphasia. Findings can be used to supplement and validate other priority-setting exercises.Priority setting exercises are integral to improving patient care.Twitter is a useful source of data alongside more traditional in-person methods.Key areas of stroke care requiring attention include: psychological support; information sharing; treatment burden; equity of access to rehabilitation services; management of fatigue and aphasia.Priority setting exercises are integral to improving patient care.Twitter is a useful source of data alongside more traditional in-person methods.Key areas of stroke care requiring attention include: psychological support; information sharing; treatment burden; equity of access to rehabilitation services; management of fatigue and aphasia. [ABSTRACT FROM AUTHOR]

Research on Open Science practices in Health Psychology is lacking. This meta-research study aimed to identify research question priorities and obtain consensus on the Top 5 prioritised research questions for Open Science in Health Psychology. An international Delphi consensus study was conducted. Twenty-three experts in Open Science and Health Psychology within the European Health Psychology Society (EHPS) suggested research question priorities to create a 'long-list' of items (Phase 1). Forty-three EHPS members rated the importance of these items, ranked their top five and suggested their own additional items (Phase 2). Twenty-four EHPS members received feedback on Phase 2 responses and then re-rated and re-ranked their top five research questions (Phase 3). The top five ranked research question priorities were: 1. 'To what extent are Open Science behaviours currently practised in Health Psychology?', 2. 'How can we maximise the usefulness of Open Data and Open Code resources?', 3. 'How can Open Data be increased within Health Psychology?', 4. 'What interventions are effective for increasing the adoption of Open Science in Health Psychology?' and 5. 'How can we increase free Open Access publishing in Health Psychology?'. Funding and resources should prioritise the research questions identified here. [ABSTRACT FROM AUTHOR]

Abstract Background The COVID-19 pandemic demonstrated the vital need for research to inform policy decision-making and save lives. The Wales COVID-19 Evidence Centre (WCEC) was established in March 2021 and funded for two years, to make evidence about the impact of the pandemic and ongoing research priorities for Wales available and actionable to policy decision-makers, service leads and the public. Objectives We describe the approaches we developed and our experiences, challenges and future vision. Program implementation The centre operated with a core team, including a public partnership group, and six experienced research groups as collaborating partners. Our rapid evidence delivery process had five stages: 1. Stakeholder engagement (continued throughout all stages); 2. Research question prioritisation; 3. Bespoke rapid evidence review methodology in a phased approach; 4. Rapid primary research; and 5. Knowledge Mobilisation to ensure the evidence was available for decision-makers. Main achievements Between March 2021–23 we engaged with 44 stakeholder groups, completed 35 Rapid Evidence Reviews, six Rapid Evidence Maps and 10 Rapid Evidence Summaries. We completed four primary research studies, with three published in peer reviewed journals, and seven ongoing. Our evidence informed policy decision-making and was cited in 19 Welsh Government papers. These included pandemic infection control measures, the Action Plan to tackle gender inequalities, and Education Renew and Reform policy. We conducted 24 Welsh Government evidence briefings and three public facing symposia. Policy implications Strong engagement with stakeholder groups, a phased rapid evidence review approach, and primary research to address key gaps in current knowledge enabled high-quality efficient, evidence outputs to be delivered to help inform Welsh policy decision-making during the pandemic. We learn from these processes to continue to deliver evidence from March 2023 as the Health and Care Research Wales Evidence Centre, with a broader remit of health and social care, to help inform policy and practice decisions during the recovery phase and beyond.

Objective: An innovative approach by two Queensland health services was taken to establish a shared maternity services' research agenda by partnering with consumers and clinicians. The objective was to set the top five research priorities to ensure that the future direction of maternity research was relevant to end-user and organisational needs. Methods: A modified James Lind Alliance (JLA) methodology was applied between August 2022 and February 2023 across two south-east Queensland Health Services which included five participating maternity units and involved partnership with consumers, healthcare professionals and clinician researchers. The reporting guideline for priority setting of health research (REPRISE) was followed. Results: There were 192 respondents to the initial harvesting survey, generating 461 research suggestions. These were aggregated into 122 unique questions and further summarised into a list of 44 research questions. The 157 eligible interim prioritisation survey respondents short-listed 27 questions ready for ranking at a final consensus workshop. The top five question themes were: (1) maternity care experience, engagement and outcomes of priority populations; (2) increasing spontaneous vaginal birth; (3) experiences and perceptions of woman/person-centred care; (4) best practice care during the 'fourth' trimester; and (5) antibiotic use during labour and birth. Conclusion: Applying an adapted JLA framework can successfully shape and establish a research agenda within Australian health services, through partnership with consumers and practicing clinicians. This is a transparent process that strengthens the legitimacy and credibility of research agendas, and it can form a replicable framework for other settings. What is known about the topic? Establishment of research agendas often neglects the participation of research end-users, consumers and practising clinicians, consequently limiting relevance and translation. What does this paper add? Prioritised specific maternity research questions were jointly generated by consumers and front-line clinicians to highlight areas of focus for research funding and support. What are the implications for practitioners? By partnering with consumers and practising clinicians health service research priorities can be established to optimise patient outcomes and ensure future research is both translational and relevant. [ABSTRACT FROM AUTHOR]

While research is linked with informed decision-making and improved healthcare delivery and patient outcomes, the process of generating and translating research evidence in practice and capturing its impact can often be challenging. Based on document and database reviews and interviews in a regional Australian health system, Brown et al discuss the challenges of assessing the impact of research investments over a ten-year period. This commentary explores three inter-related lessons from this article for developing and sustaining a research culture and supporting translation in a health system: (i) achieving a shared definition and expectation of research; (ii) the importance of stakeholder engagement particularly for research prioritisation; and (iii) enabling research across a system. In doing so, it highlights the role and value of engaging knowledge generators and end-users from clinical, management and community domains not only in research development but most importantly in research prioritisation.

Background Prioritisation of research activities for infectious disease pathogens is usually undertaken through the identification of important research and knowledge gaps. Research prioritisation is an essential element of both effective responses to disease outbreaks and adequate preparedness. There is however currently no published mapping of activities on and evidence from research prioritisation for high consequence pathogens. The objectives of this review are to map all published research prioritisation exercises on high-consequence pathogens; provide an overview of methodologies employed for prioritising research for these pathogens; describe monitoring and evaluation processes for research areas prioritised; and identify any standards and guidance for effectively undertaking research prioritisation activities for high consequence pathogens. Methods The Joanna Briggs Institute guidance of scoping review conduct will be used. The search will be undertaken using the key terms of “research prioritisation”, “response”, “control”, and related terms, and a list of high-consequence pathogens derived from WHO (2020), EMERGE (2019), Europe CDC (2022) and the Association of Southeast Asian Nations (2021). We will search WHO Global Index Medicus; Ovid Medline; Ovid Embase; Ovid Global Health; and Scopus. Backward citations review of the included full text documents will also be conducted. Google Scholar and Overton will be searched for grey literature. Two independent reviewers will screen the retrieved documents using Rayyan and extract data in a data extraction template in Microsoft Excel 2021. Screening results will be presented using the PRISMA-ScR template with narrative synthesis undertaken for the extracted data. Conclusion This review will map existing research priorities for high consequence pathogens. Further, it will provide an understanding of methodologies used for prioritisation, processes for monitoring and evaluation of progress made against research agendas, and evidence on standards that could be recommended for effective prioritisation of research for high consequence pathogens.

The Targeted Translation Research Accelerator program was created to address cardiovascular disease and diabetes in Australia. To maximise the impact of the considerable investment in this program, a structured prioritisation project was undertaken to determine the highest priority health and medical unmet needs in cardiovascular disease and diabetes. The project was led by Monash University's Behaviour Works Australia in collaboration with Australian National University, Research Australia, and MTPConnect. We conducted an online survey with 318 experts and community representatives to generate a 'long list' of unmet needs for (1) cardiovascular disease; (2) diabetes; and (3) interactions in the pathogenesis of Type 1 diabetes, Type 2 diabetes, and cardiovascular disease. We then convened roundtables of clinical, research, and community leaders to discuss survey results. They prioritised unmet needs against six predefined criteria then discussed results. We present the final priority areas for funding. We demonstrate how a feasible, reproducible, and collaborative prioritisation methodology can be used when designing research funding programs. Such approaches can ensure that funding is directed towards projects that are valuable to the community and reflective of expert opinion. [ABSTRACT FROM AUTHOR]

Background Dementia research prioritisation allows for the systematic allocation of investment in dementia research by governments, funding agencies and the private sector. There is currently a lack of information available in Ireland regarding priority areas for dementia research. To address this gap, a dementia research prioritisation exercise was undertaken, consisting of an online survey of professionals in the dementia field and workshops for people living with dementia and family carers. Methods (1) An anonymous online survey of professionals, based on an existing WHO global survey: the global survey was adapted to an Irish context and participants were asked to score 65 thematic research avenues under five criteria; (2) A mixed-methods exercise for people living with dementia and family carers: this involved two facilitated workshops where participants voted on the research themes they felt were important to them and should be addressed through research. Results Eight of the top ten research priorities in the survey of professionals (n=108) were focused on the delivery and quality of care and services for people with dementia and carers. Other research avenues ranked in the top ten focused on themes of timely and accurate diagnosis of dementia in primary health-care practices and diversifying therapeutic approaches in clinical trials. Participants in the workshops (n=13) ranked ‘better drugs and treatment for people with dementia’, ‘dementia prevention/ risk reduction’ and ‘care for people with dementia and carers’ as their top priority areas. Conclusions Findings from this prioritisation exercise will inform and motivate policymakers, funders and researchers to support and conduct dementia-focused research and ensure that the limited resources made available are spent on research that has the most impact for those who will benefit from and use the results of research.

Abstract Background New Zealand recently introduced law permitting terminally ill people to request and receive assisted dying (AD) in specified circumstances. Given the nature and complexity of this new health service, research is vital to determine how AD is operating in practice. Objective To identify research priorities regarding the implementation and delivery of AD in New Zealand. Methods Using an adapted research prioritisation methodology, the researchers identified 15 potential AD research topics. A mixed-methods survey of health professionals was undertaken where respondents were asked to rate the 15 topics according to the relative importance for research to be conducted on each issue. Respondents could also suggest additional research areas, and were invited to participate in a follow-up interview. Results One hundred and nineteen respondents completed the survey. 31% had some experience with AD. The highest rated research topic was the ‘effectiveness of safeguards in the Act to protect people’; the lowest rated topic was research into the ‘experiences of non-provider (e.g., administrative, cleaning) staff where assisted dying is being provided’. Respondents suggested 49 other research topics. Twenty-six interviews were conducted. Thematic analysis of interview data and open-ended survey questions was undertaken. Six research themes were identified: general factors related to the wider health system; the experiences of health care providers at the bedside; medico-legal issues; the impact of AD; experiences on the day of dying; and the overall effectiveness of the AD system. Key issues for stakeholders included safety of the AD service; ensuring access to AD; achieving equity for ‘structurally disadvantaged’ groups; and ensuring the well-being of patients, families/whānau, providers and non-providers. Conclusions Based on early experiences of the implementation of the AD service, health professionals provide important insights into what research should be prioritised post-legalisation of AD. These findings can be used to shape the research agenda so that research may inform law, policy and best practice.

Background: Bayesian methods have potential for efficient design of randomized clinical trials (RCTs) by incorporating existing evidence. Furthermore, value of information (VOI) methods estimate the value of reducing decision uncertainty, aiding transparent research prioritization. These methods require a prior distribution describing current uncertainty in key parameters, such as relative treatment effect (RTE). However, at the time of designing and commissioning research, there may be no data to base the prior on. The aim of this article is to present methods to construct priors for RTEs based on a collection of previous RCTs. Methods: We developed 2 Bayesian hierarchical models that captured variability in RTE between studies within disease area accounting for study characteristics. We illustrate the methods using a data set of 743 published RCTs across 9 disease areas to obtain predictive distributions for RTEs for a range of disease areas. We illustrate how the priors from such an analysis can be used in a VOI analysis for an RCT in bladder cancer and compare the results with those using an uninformative prior. Results: For most disease areas, the predicted RTE favored new interventions over comparators. The predicted effects and uncertainty differed across the 9 disease areas. VOI analysis showed that the expected value of research is much lower with our empirically derived prior compared with an uninformative prior. Conclusions: This study demonstrates a novel approach to generating informative priors that can be used to aid research prioritization and trial design. The methods can also be used to combine RCT evidence with expert opinion. Further work is needed to create a rich database of RCT evidence that can be used to form off-the-shelf priors. Highlights: Bayesian methods have potential to aid the efficient design of randomized clinical trials (RCTs) by incorporating existing evidence. Value-of-information (VOI) methods can be used to aid research prioritization by calculating the value of current decision uncertainty. These methods require a distribution describing current uncertainty in key parameters, that is, "prior distributions." This article demonstrates a methodology to estimate prior distributions for relative treatment effects (odds and hazard ratios) estimated from a collection of previous RCTs. These results may be combined with expert elicitation to facilitate 1) value-of-information methods to prioritize research or 2) Bayesian methods for research design. [ABSTRACT FROM AUTHOR]

Background: The Coronavirus disease 2019 (COVID-19) pandemic caused significantly lower reported mortalities on the African continent as compared to other regions. Yet, many countries on the continent are still contending with the devastating economic, social and indirect health impacts. African researchers and policy makers have identified research priority areas which take cognisance of the unique research needs of African countries. A baseline assessment of the alignment of funded research in Africa to these priorities and World Health Organization’s COVID-19 research priorities was undertaken in July, 2020. We present a two-year update to this analysis of funded COVID-19 research in Africa. Methods: Data captured in the UK Collaborative on Development Research and Global Research Collaboration for Infectious Disease Preparedness COVID-19 Research Project Tracker as of 15th July, 2022 was analysed. An additional analysis of institutions receiving funding for COVID-19 research is presented. We also analysed the change in funding for COVID-19 research in Africa since July, 2020. Results: The limited COVID-19 research identified in Africa early in the pandemic has persisted over the subsequent two-year period assessed. When number of projects are considered, governmental funders based in Europe and United States supported the most research. Only nine research funders based in Africa were identified. A number of partnerships between African institutions and institutions based on other continents were identified, however, most research projects were undertaken in research institutions based in Africa only. Our findings highlight the relevance of the WHO research priorities for the pandemic response in Africa. Many research questions raised by African researchers remain unaddressed, among which are questions related to clinical management of COVID-19 infections in Africa. Conclusions: Two years after the identification of Africa’s COVID-19 research priorities, the findings suggest a missed opportunity in new research funding to answer pertinent questions for the pandemic response in Africa.

Background: New Zealand recently introduced law permitting terminally ill people to request and receive assisted dying (AD) in specified circumstances. Given the nature and complexity of this new health service, research is vital to determine how AD is operating in practice. Objective: To identify research priorities regarding the implementation and delivery of AD in New Zealand. Methods: Using an adapted research prioritisation methodology, the researchers identified 15 potential AD research topics. A mixed-methods survey of health professionals was undertaken where respondents were asked to rate the 15 topics according to the relative importance for research to be conducted on each issue. Respondents could also suggest additional research areas, and were invited to participate in a follow-up interview. Results: One hundred and nineteen respondents completed the survey. 31% had some experience with AD. The highest rated research topic was the 'effectiveness of safeguards in the Act to protect people'; the lowest rated topic was research into the 'experiences of non-provider (e.g., administrative, cleaning) staff where assisted dying is being provided'. Respondents suggested 49 other research topics. Twenty-six interviews were conducted. Thematic analysis of interview data and open-ended survey questions was undertaken. Six research themes were identified: general factors related to the wider health system; the experiences of health care providers at the bedside; medico-legal issues; the impact of AD; experiences on the day of dying; and the overall effectiveness of the AD system. Key issues for stakeholders included safety of the AD service; ensuring access to AD; achieving equity for 'structurally disadvantaged' groups; and ensuring the well-being of patients, families/whānau, providers and non-providers. Conclusions: Based on early experiences of the implementation of the AD service, health professionals provide important insights into what research should be prioritised post-legalisation of AD. These findings can be used to shape the research agenda so that research may inform law, policy and best practice. [ABSTRACT FROM AUTHOR]

Objective: The chronic complications of ageing with HIV are not well studied in sub-Saharan Africa (SSA) where general healthcare resources are limited. We aimed to collaborate with individuals living with HIV aged ≥ 50 years, and community elders (aged ≥ 60 years) living with non-communicable diseases in the Kilimanjaro region of Tanzania in a health research priority-setting exercise. Methods: We conducted structured workshops based on broad questions to aid discussion and group-based patient priority setting, alongside discussion of the feasibility of future community research engagement. Participant priorities were tallied and ranked to arrive at core priorities from consensus discussion. Results: Thirty older people living with HIV and 30 community elders attended separate priority setting workshops. Both groups reported motivation to participate in, conduct, and oversee future studies. In this resource-limited setting, basic needs such as healthcare access were prioritised much higher than specific HIV-complications or chronic disease. Stigma and social isolation were highly prioritised in those living with HIV. Conclusions: Community engagement and involvement in HIV and ageing research appears feasible in Tanzania. Ageing and non-communicable disease research should consider the wider context, and lack of basic needs in low-income settings. A greater impact may be achieved with community involvement. Plain English summary: The population in sub-Saharan Africa is ageing. The majority of people living with HIV infection also live in Africa, and they are ageing now that treatment is widely available. Current research on the chronic complications of ageing with and without HIV in sub-Saharan Africa is very limited, meaning that little is known on how to improve symptoms. In this pilot study, researchers from Tanzania and the UK worked with older people living with HIV, and community elders in Tanzania in a health research priority-setting exercise. Thirty older people living with HIV and thirty community elders attended workshops where they listed issues important to them, and then voted for each item as a group. Priorities were ranked in order of importance by adding up the number of votes. We also asked how interested and motivated older people were to work jointly with academic researchers and what might help and support them to do this. Both groups reported that they felt very motivated to participate in, conduct and oversee future research studies. A key finding was that basic needs, such as being able to see a doctor regularly and buying medications, were prioritised much higher than specific HIV-complications or chronic disease. Stigma and social isolation were important issues for older people with HIV. Our pilot findings suggest that meeting basic needs should be a key part of future work on living and ageing with chronic disease in Tanzania. The importance of working with patients and communities is also highlighted. [ABSTRACT FROM AUTHOR]

Abstract Background Aboriginal and Torres Strait Islander peoples (hereafter respectfully referred to as Indigenous Australians) represent about 3% of the total Australian population. Major health disparities exist between Indigenous and Non-Indigenous Australians. To address this, it is vital to understand key health priorities and knowledge gaps in the current landscape of clinical trial activity focusing on Indigenous health in Australia. Methods Australian-based clinical trials registered on the Australian New Zealand Clinical Trials Registry or ClinicalTrials.gov from 2008 to 2018 were analysed. Australian clinical trials with and without a focus on Indigenous health were compared in terms of total numbers, participant size, conditions studied, design, intervention type and funding source. Results Of the 9206 clinical trials included, 139 (1.5%) focused on Indigenous health, with no proportional increase in Indigenous trials over the decade (p = 0.30). Top conditions studied in Indigenous-focused trials were mental health (n = 35, 28%), cardiovascular disease (n = 20, 20%) and infection (n = 16, 16%). Compared to General Australian trials, Indigenous-focused trials more frequently studied ear conditions (OR 20.26, 95% CI 10.32–37.02, p

Objective: Research prioritisation helps to target research resources to the most pressing health and healthcare needs of a population. This systematic review aimed to report research priorities in maternal and perinatal health and to assess the methods that were used to identify them.Methods: A systematic review was undertaken. Projects that aimed to identify research priorities that were considered to be amenable to clinical trials research were eligible for inclusion. The search, limited to the last decade and publications in English, included MEDLINE, EMBASE, CINHAL, relevant Cochrane priority lists, Cochrane Priority Setting Methods Group homepage, James Lind Alliance homepage, Joanna Brigg's register, PROSPERO register, reference lists of all included articles, grey literature, and the websites of relevant professional bodies, until 13 October 2020. The methods used for prioritisation were appraised using the Reporting Guideline for Priority Setting of Health Research (REPRISE).Findings: From the 62 included projects, 757 research priorities of relevance to maternal and perinatal health were identified. The most common priorities related to healthcare systems and services, pregnancy care and complications, and newborn care and complications. The least common priorities related to preconception and postpartum health, maternal mental health, contraception and pregnancy termination, and fetal medicine and surveillance. The most commonly used prioritisation methods were Delphi (20, 32%), Child Health Nutrition Research Initiative (17, 27%) and the James Lind Alliance (10, 16%). The fourteen projects (23%) that reported on at least 80% of the items included in the REPRISE guideline all used an established research prioritisation method.Conclusions: There are a large number of diverse research priorities in maternal and perinatal health that are amenable to future clinical trials research. These have been identified by a variety of research prioritisation methods. [ABSTRACT FROM AUTHOR]

Background: Prioritisation of research activities for infectious disease pathogens is usually undertaken through the identification of important research and knowledge gaps. Research prioritisation is an essential element of both effective responses to disease outbreaks and adequate preparedness. There is however currently no published mapping of activities on and evidence from research prioritisation for high consequence pathogens. The objectives of this review are to map all published research prioritisation exercises on high-consequence pathogens; provide an overview of methodologies employed for prioritising research for these pathogens; describe monitoring and evaluation processes for research areas prioritised; and identify any standards and guidance for effectively undertaking research prioritisation activities for high consequence pathogens. Methods: The Joanna Briggs Institute guidance of scoping review conduct will be used. The search will be undertaken using the key terms of “research prioritisation”, “response”, “control”, and related terms, and a list of high-consequence pathogens derived from WHO (2020), EMERGE (2019), Europe CDC (2022) and the Association of Southeast Asian Nations (2021). We will search WHO Global Index Medicus; Ovid Medline; Ovid Embase; Ovid Global Health; and Scopus. Backward citations review of the included full text documents will also be conducted. Google Scholar and Overton will be searched for grey literature. Two independent reviewers will screen the retrieved documents using Rayyan and extract data in a data extraction template in Microsoft Excel 2021. Screening results will be presented using the PRISMA-ScR template with narrative synthesis undertaken for the extracted data. Conclusion: This review will map existing research priorities for high consequence pathogens. Further, it will provide an understanding of methodologies used for prioritisation, processes for monitoring and evaluation of progress made against research agendas, and evidence on standards that could be recommended for effective prioritisation of research for high consequence pathogens.

Background: Aboriginal and Torres Strait Islander peoples (hereafter respectfully referred to as Indigenous Australians) represent about 3% of the total Australian population. Major health disparities exist between Indigenous and Non-Indigenous Australians. To address this, it is vital to understand key health priorities and knowledge gaps in the current landscape of clinical trial activity focusing on Indigenous health in Australia.Methods: Australian-based clinical trials registered on the Australian New Zealand Clinical Trials Registry or ClinicalTrials.gov from 2008 to 2018 were analysed. Australian clinical trials with and without a focus on Indigenous health were compared in terms of total numbers, participant size, conditions studied, design, intervention type and funding source.Results: Of the 9206 clinical trials included, 139 (1.5%) focused on Indigenous health, with no proportional increase in Indigenous trials over the decade (p = 0.30). Top conditions studied in Indigenous-focused trials were mental health (n = 35, 28%), cardiovascular disease (n = 20, 20%) and infection (n = 16, 16%). Compared to General Australian trials, Indigenous-focused trials more frequently studied ear conditions (OR 20.26, 95% CI 10.32-37.02, p < 0.001), infection (OR 3.11, 95% CI 1.88-4.85, p < 0.001) and reproductive health (OR 2.59, 95% CI 1.50-4.15, p < 0.001), and less of musculoskeletal conditions (OR 0.09, 95% CI 0.00-0.37, p < 0.001), anaesthesiology (OR 0.16, 95% CI 0.01-0.69, p = 0.021) and surgery (OR 0.17, 95% CI 0.01-0.73, p = 0.027). For intervention types, Indigenous trials focused more on prevention (n = 48, 36%) and screening (n = 18, 13%). They were far less involved in treatment (n = 72, 52%) as an intervention than General Australian trials (n = 6785, 75%), and were less likely to be blinded (n = 48, 35% vs n = 4273, 47%) or have industry funding (n = 9, 7% vs 1587, 17%).Conclusions: Trials with an Indigenous focus differed from General Australian trials in the conditions studied, design and funding source. The presented findings may inform research prioritisation and alleviate the substantial burden of disease for Indigenous population. [ABSTRACT FROM AUTHOR]

Incidence of mesothelioma worldwide is growing and the UK reports the highest global incidence. Mesothelioma is an incurable cancer with a high symptom burden. However, it is under researched when compared to other cancers. The aim of this exercise was to identify unanswered questions about the mesothelioma patient and carer experience in the UK and to prioritise research areas of most importance through consultation with patients, carers and professionals. A virtual Research Prioritisation Exercise was conducted. This involved a review of mesothelioma patient and carer experience literature to identify research gaps and a national online survey to identify and rank research gaps. Following this, a modified consensus method with mesothelioma experts (patients, carers and professionals from healthcare, legal, academic and volunteer organisations) was undertaken to reach a consensus regarding mesothelioma patient and carer experience research priorities. Survey responses were received from 150 patients, carers and professionals and 29 research priorities were identified. During consensus meetings, 16 experts refined these into a list of 11 key priorities. The five most urgent priorities were symptom management, receiving a mesothelioma diagnosis, palliative and end of life care, treatment experiences, barriers and facilitators to joined up service provision. This novel priority setting exercise will shape the national research agenda, contribute knowledge to inform nursing and wider clinical practice and ultimately improve the experiences of mesothelioma patients and carers. What is known about this topic? • There are gaps in knowledge about the impact of living with mesothelioma. What this paper adds? • First mesothelioma patient and carer experience research prioritisation exercise. • Adopted virtual methods to enable safe and effective engagement with steering group. • Authentically captured the patient and carer voice to maximise research investment. • Generated a list of 11 research priorities to shape the national research agenda. [ABSTRACT FROM AUTHOR]