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1.
Disabil Rehabil ; : 1-7, 2024 Sep 26.
Artigo em Inglês | MEDLINE | ID: mdl-39324388

RESUMO

PURPOSE: Prioritisation 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. MATERIALS AND METHODS: Content analysis of Twitter was conducted. An electronic search used the identifiers: #strokesurvivor and #strokerecovery. Tweets spanning four weeks from January 2021 were analysed. RESULTS: 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). CONCLUSIONS: 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.

2.
Glob Health Res Policy ; 9(1): 18, 2024 05 31.
Artigo em Inglês | MEDLINE | ID: mdl-38822437

RESUMO

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.


Assuntos
COVID-19 , Política de Saúde , Formulação de Políticas , COVID-19/epidemiologia , COVID-19/prevenção & controle , Humanos , País de Gales , Pandemias/prevenção & controle , Tomada de Decisões , Prática Clínica Baseada em Evidências , Medicina Baseada em Evidências
3.
J Public Health Policy ; 44(4): 658-673, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-38017149

RESUMO

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.


Assuntos
Doenças Cardiovasculares , Diabetes Mellitus Tipo 2 , Humanos , Doenças Cardiovasculares/epidemiologia , Diabetes Mellitus Tipo 2/epidemiologia , Austrália , Prioridades em Saúde , Inquéritos e Questionários
4.
HRB Open Res ; 6: 12, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37954094

RESUMO

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.

5.
Int J Health Policy Manag ; 12: 7792, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37579376

RESUMO

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.


Assuntos
Serviços de Saúde , Motivação , Humanos , Austrália , Hospitais
6.
Open Res Eur ; 3: 16, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37645485

RESUMO

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.

7.
Med Decis Making ; 43(5): 553-563, 2023 07.
Artigo em Inglês | MEDLINE | ID: mdl-37057388

RESUMO

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.


Assuntos
Projetos de Pesquisa , Humanos , Teorema de Bayes , Modelos de Riscos Proporcionais , Incerteza , Ensaios Clínicos Controlados Aleatórios como Assunto
8.
BMC Palliat Care ; 22(1): 40, 2023 Apr 10.
Artigo em Inglês | MEDLINE | ID: mdl-37038170

RESUMO

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/whanau, 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.


Assuntos
Suicídio Assistido , Humanos , Nova Zelândia , Pessoal de Saúde , Pesquisadores , Inquéritos e Questionários
9.
Eur J Oncol Nurs ; 63: 102281, 2023 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-36905742

RESUMO

OBJECTIVES: 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. MATERIALS AND METHODS: 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. RESULTS: 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. CONCLUSION: 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.


Assuntos
Mesotelioma , Assistência Terminal , Humanos , Cuidadores , Cuidados Paliativos , Pacientes
10.
Res Involv Engagem ; 9(1): 3, 2023 Feb 17.
Artigo em Inglês | MEDLINE | ID: mdl-36805028

RESUMO

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.


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.

11.
Eur J Obstet Gynecol Reprod Biol ; 280: 120-131, 2023 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-36455392

RESUMO

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.


Assuntos
Pesquisa Biomédica , Prioridades em Saúde , Criança , Recém-Nascido , Gravidez , Feminino , Humanos , Atenção à Saúde , Projetos de Pesquisa , Perinatologia
12.
Open Res Afr ; 6: 16, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-38174097

RESUMO

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.

13.
Syst Rev ; 11(1): 277, 2022 12 23.
Artigo em Inglês | MEDLINE | ID: mdl-36564846

RESUMO

BACKGROUND: A systematically and transparently prepared research priority-setting process within a specific scientific area is essential in order to develop a comprehensive and progressive evidence-based approach that will have a substantial societal impact on the site of interest. On the basis of two consensus workshops, the authors suggest the following methods for all such processes: use of experts, stakeholder involvement, literature review, and ranking. OBJECTIVES: The identification, categorisation, and discussion of methods for preparing a research prioritisation process. METHODS: Eligibility criteria: Evidence synthesis includes original studies presenting a research prioritisation process and which listed the methods used to create a research prioritisation process. Only evidence syntheses related to health research were included. DATA SOURCES: We searched the following electronic databases, without limiting by date or language: MEDLINE Ovid, Embase Ovid, Epistemonikos, and CINAHL EBSCO. CHARTING METHODS: The methods used were mapped and broken down into different elements, and the use of the elements was determined. To support the mapping, (A) all of the elements were collapsed into unique categories, and (B) four essential categories were selected as crucial to a successful research prioritisation process. RESULTS: Twelve evidence syntheses were identified, including 416 original studies. The identification and categorisation of methods used resulted in 13 unique categories of methods used to prepare a research agenda. CONCLUSION: None of the identified categories was used in all of the original studies. Surprisingly, all four of the essential categories were used in only one of the 416 original studies identified. There is seemingly no international consensus on which methods to use when preparing a research prioritisation process. PROTOCOL REGISTRATION: The protocol was registered in Open Science Framework ( https://osf.io/dygz8/ ).


Assuntos
Consenso , Humanos
14.
Psychol Health ; : 1-25, 2022 Oct 31.
Artigo em Inglês | MEDLINE | ID: mdl-36317294

RESUMO

OBJECTIVE: 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. METHODS AND MEASURES: 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). RESULTS: 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?'. CONCLUSION: Funding and resources should prioritise the research questions identified here.

15.
BMC Public Health ; 22(1): 971, 2022 05 14.
Artigo em Inglês | MEDLINE | ID: mdl-35568933

RESUMO

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.


Assuntos
Serviços de Saúde do Indígena , Havaiano Nativo ou Outro Ilhéu do Pacífico , Austrália/epidemiologia , Humanos , Saúde Mental , Encaminhamento e Consulta , Sistema de Registros
16.
Animals (Basel) ; 11(8)2021 Jul 30.
Artigo em Inglês | MEDLINE | ID: mdl-34438707

RESUMO

Surgical sterilisation is a core activity of free-roaming dog population management (DPM) programmes globally. However, there is limited published evidence on its impact at the population level. To support evidence-based decision making in this field, it is important that research conducted is relevant to those involved in working with free-roaming dogs and implementing such programmes. The aim of this study was to adapt the James Lind Alliance (JLA) user involvement approach to systematically identify the top 10 research priorities regarding the impact of canine sterilisation. International stakeholders with experience working in DPM were asked in an online survey what unanswered questions they had regarding the impact of sterilisation programmes. Thematic analysis of survey responses was used to develop a long list of collated indicative research questions (CIRQs). A literature review was performed to identify questions that were 'true uncertainties' (had not been answered by evidence review). These questions were reduced to a shortlist via an online interim prioritisation survey, and a Delphi consensus process determined the top 10 priorities. The top 10 questions related to dog population size and turnover, dog bite incidents, rabies control, implementation in the field and human behaviour change. These priorities were identified and shaped by people with direct experience of canine surgical sterilisation programmes, and as such are an essential resource for directing future funding and research. Addressing these priorities will generate evidence that is directly applicable to policy makers and practitioners who make decisions regarding the management of free-roaming dogs (FRDs) worldwide.

17.
Res Involv Engagem ; 7(1): 3, 2021 Jan 06.
Artigo em Inglês | MEDLINE | ID: mdl-33407929

RESUMO

BACKGROUND: Patient and public involvement (PPI) can help with steering and shaping research prioritisation and execution. However, some groups of people may not be encouraged to take part and their voices may be seldom listened to in the production of research. This is important to consider because they may have poorer healthcare experiences. We tried using art as a vehicle for including individuals not necessarily invited to be part of research priority setting. METHODS: We contacted existing groups and organisations to reach people not routinely supported to be part of PPI. We targeted individuals: a) with dementia, b) with a mental and physical health condition, c) of South Asian heritage. We ran a workshop with each group at which individuals shared their experiences of healthcare. A young amateur artist also attended, who produced a piece of artwork afterwards that reflected the research priorities raised. We held a Twitter chat to discuss these pieces of art and the processes involved in their generation. RESULTS: From each workshop, we produced a list of research priorities. These included: a) improving coordination of care for people with dementia, b) information needs and anxiety/guilt around accessing care for people with physical and mental health conditions, c) supporting discussion of women's health issues in South Asian communities. These priorities were reflected in three pieces of art, which can be viewed online. Feedback from those at workshops suggested that the artwork helped them to feel that their voice had been heard and triggered their interest in how research is developed. Those involved in the Twitter chat commented that art was one means through which researchers could connect with a range of groups in a PPI context when preparing and producing a study. CONCLUSIONS: We found the medium of art to be an effective way of including a range of people in research prioritisation setting. This approach could be useful for future PPI, building on what we have learnt from the project described in this paper.

18.
Eur Geriatr Med ; 12(2): 413-422, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-33219983

RESUMO

PURPOSE: Geriatric Emergency Medicine (GEM) focuses on delivering optimal care to (sub)acutely ill older people. This involves a multidisciplinary approach throughout the whole healthcare chain. However, the underpinning evidence base is weak and it is unclear which research questions have the highest priority. The aim of this study was to provide an inventory and prioritisation of research questions among GEM professionals throughout Europe. METHODS: A two-stage modified Delphi approach was used. In stage 1, an online survey was administered to various professionals working in GEM both in the Emergency Department (ED) and other healthcare settings throughout Europe to make an inventory of potential research questions. In the processing phase, research questions were screened, categorised, and validated by an expert panel. Subsequently, in stage 2, remaining research questions were ranked based on relevance using a second online survey administered to the same target population, to identify the top 10 prioritised research questions. RESULTS: In response to the first survey, 145 respondents submitted 233 potential research questions. A total of 61 research questions were included in the second stage, which was completed by 176 respondents. The question with the highest priority was: Is implementation of elements of CGA (comprehensive geriatric assessment), such as screening for frailty and geriatric interventions, effective in improving outcomes for older patients in the ED? CONCLUSION: This study presents a top 10 of high-priority research questions for a European Research Agenda for Geriatric Emergency Medicine. The list of research questions may serve as guidance for researchers, policymakers and funding bodies in prioritising future research projects.


Assuntos
Medicina de Emergência , Prioridades em Saúde , Idoso , Técnica Delphi , Serviço Hospitalar de Emergência , Europa (Continente) , Humanos
19.
HRB Open Res ; 3: 13, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-33299965

RESUMO

Background: The Rare Disease Research Partnership (RAinDRoP) was established in 2018 to bring together a wide variety of diverse voices in the rare disease community in Ireland and form a research partnership. This approach enabled clinicians, patients, carers and researchers to work together to identify top research priorities for rare diseases, which focused on a life-course perspective rather than a disease-specific need.                                                                                                           Methods: A participatory multiple phase approach was used to identify research priorities for rare diseases. The research process involved three main phases: Phase I, Public Consultation Survey on Research in Rare Diseases in Ireland (PCSRRDI); Phase II, Research Prioritisation Workshop (RPW); Phase III, Follow-up Public Consultation and Prioritisation Survey (FWPCPS). Results: In total, 240 individuals completed the phase I PCSRRDI, which comprised of a cross-section of health care professionals, researchers and people living with rare diseases. One thousand and fifteen statements were collected, reflecting issues and shared challenges in rare diseases. A shortlisting step by step was used to identify any statements that had received a total score of above 50% into 10-12 researchable questions or statements per the theme for the phase II workshop. Phase II was focused on three main themes: (1) Route to Diagnosis, (2) Living with Rare Disease, (3) Integrated and Palliative Care. In total, 62 individuals attended the overall workshop; 42 participated in the prioritisation sessions. A cross-section of health care professionals, researchers and people living with rare diseases were engaged at each workshop. Seventy-five individuals completed the final phase III public ranking by priority responses, and they ranked the top 15 research priorities defined by the multi-stakeholders at the phase II consensus meeting. Conclusions: This study identified priorities for rare diseases research aimed at improving the health and wellbeing of people living with rare diseases.

20.
BMC Emerg Med ; 20(1): 68, 2020 08 31.
Artigo em Inglês | MEDLINE | ID: mdl-32867675

RESUMO

BACKGROUND: More than half of deaths in low- and middle-income countries (LMICs) result from conditions that could be treated with emergency care - an integral component of universal health coverage (UHC) - through timely access to lifesaving interventions. METHODS: The World Health Organization (WHO) aims to extend UHC to a further 1 billion people by 2023, yet evidence supporting improved emergency care coverage is lacking. In this article, we explore four phases of a research prioritisation setting (RPS) exercise conducted by researchers and stakeholders from South Africa, Egypt, Nepal, Jamaica, Tanzania, Trinidad and Tobago, Tunisia, Colombia, Ethiopia, Iran, Jordan, Malaysia, South Korea and Phillipines, USA and UK as a key step in gathering evidence required by policy makers and practitioners for the strengthening of emergency care systems in limited-resource settings. RESULTS: The RPS proposed seven priority research questions addressing: identification of context-relevant emergency care indicators, barriers to effective emergency care; accuracy and impact of triage tools; potential quality improvement via registries; characteristics of people seeking emergency care; best practices for staff training and retention; and cost effectiveness of critical care - all within LMICs. CONCLUSIONS: Convened by WHO and facilitated by the University of Sheffield, the Global Emergency Care Research Network project (GEM-CARN) brought together a coalition of 16 countries to identify research priorities for strengthening emergency care in LMICs. Our article further assesses the quality of the RPS exercise and reviews the current evidence supporting the identified priorities.


Assuntos
Países em Desenvolvimento , Serviços Médicos de Emergência/normas , Relações Interprofissionais , Melhoria de Qualidade , Pesquisa , Humanos , Organização Mundial da Saúde
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