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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.

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.

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

Abstract 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.

Abstract Background In 2014 Parkinson’s UK conducted a research prioritisation exercise with stakeholders highlighting important clinical research questions. The exercise highlighted the need for effective interventions to be developed and tested to tackle a range of non-motor symptoms including: sleep quality, stress and anxiety, mild cognitive impairment, dementia and urinary problems. The present work set out to build on this exercise by prioritising types of non-pharmacological interventions to be tested to treat the identified non-motor symptoms. Methods A Patient and Public Involvement exercise was used to reach consensus on intervention priorities for the treatment of non-motor symptoms. A Delphi structure was used to support the feedback collected. A first-round prioritisation survey was conducted followed by a panel discussion. Nineteen panellists completed the first-round survey (9 people with Parkinson’s and 10 professionals working in Parkinson’s) and 16 participated in the panel discussion (8 people with Parkinson’s and 8 professionals working in Parkinson’s). A second-round prioritization survey was conducted after the panel discussion with 13 people with Parkinson’s. Results Physical activity, third wave cognitive therapies and cognitive training were rated as priority interventions for the treatment of a range of non-motor symptoms. There was broad agreement on intervention priorities between health care professionals and people with Parkinson’s. A consensus was reached that research should focus on therapies which could be used to treat several different non-motor symptoms. In the context of increasing digitisation, the need for human interaction as an intervention component was highlighted. Conclusion Bringing together Parkinson’s professionals and people with Parkinson’s resulted in a final treatment priority list which should be both feasible to carry out in routine clinical practice and acceptable to both professionals and people with Parkinson’s. The workshop further specified research priorities in Parkinson’s disease based on the current evidence base, stakeholder preferences, and feasibility. Research should focus on developing and testing non-pharmacological treatments which could be effective across a range of symptoms but specifically focusing on tailored physical activity interventions, cognitive therapies and cognitive training.

Abstract Background People living with and beyond cancer are more likely to have comorbid conditions and poorer mental and physical health, but there is a dearth of in-depth research exploring the psychosocial needs of people experiencing cancer and comorbid chronic conditions. A patient partnership approach to research prioritisation and planning can ensure outcomes meaningful to those affected and can inform policy and practice accordingly, but can be challenging. Methods We aimed to inform priorities for qualitative inquiry into the experiences and support needs of people living with and beyond cancer with comorbid illness using a partnership approach. A three-step process including a patient workshop to develop a consultation document, online consultation with patients, and academic expert consultation was carried out. The research prioritisation process was also appraised and reflected upon. Results Six people attended the workshop, ten responded online and eight academic experts commented on the consultation document. Five key priorities were identified for exploration in subsequent qualitative studies, including the diagnostic journey, the burden of symptoms, managing medications, addressing the needs of informal carers, and service provision. Limitations of patient involvement and reflections on procedural ethics, and the challenge of making measurable differences to patient outcomes were discussed. Conclusions Findings from this research prioritisation exercise will inform planned qualitative work to explore patients’ experiences of living with and beyond cancer with comorbid illness. Including patient partners in the research prioritisation process adds focus and relevance, and feeds into future work and recommendations to improve health and social care for this group of patients. Reflections on the consultation process contribute to a broadening of understanding the field of patient involvement.

Abstract Background The KwaZulu-Natal (KZN) Health Act of 2009 mandates the Provincial Health Research and Ethics Committee to develop health research priorities for the province. During 2013, the KZN Department of Health embarked on a research prioritisation process for the province. Priority research questions were generated by an inclusive process, in which a variety of stakeholders in health research in the province were engaged. The aim of this study was to determine whether research conducted at public health facilities in KZN between 01 January 2014 and 31 March 2017 met the research priorities of the province developed through the provincial research prioritisation process of 2013. Methods This was a mixed methods study. Qualitative thematic analysis was used to categorise priority research questions generated in the priority-setting process and the titles of research projects conducted after that process into themes. Quantitative analysis was used to determine the correlation between themes of the priority questions, and those of the research projects conducted after the prioritisation exercise. Statistical Package for Social Science version 25 was used to analyse the data. Results In 72% of thematic areas, there were disproportionately more priority questions than there were research projects conducted. There is thus a large disjuncture between the priorities developed through the provincial research prioritisation process of 2013 and the research projects conducted after that process in terms of major research areas. Conclusions Ensuring that research conducted responds to priority questions raised is important because it ensures that research responds to locally important issues and to the concerns of local actors. Local health managers, communities and researchers should work together to ensure that the research conducted in their areas respond to the research priorities of those areas. Health Research Committees and local ethics committees can play important roles in facilitating the responsiveness to research priorities.

Abstract Background Public engagement events are an important early strategy in developing a meaningful research agenda, which is more impactful and beneficial to the population. Evidence indicates the potential of such activities to promote mental health literacy. However, this has not yet been explored in Indonesia. Aim This paper describes a mental health public engagement festival carried out in Indonesia in November 2018 and uses evaluation data to consider the acceptability and use of such activities in Indonesia in the future. Method Evaluation data was collected from 324 of the 737 people who attended a six-day mental health festival comprising 18 events including public lectures, film screenings, arts activities, exercise classes and panel discussions. Attendees were asked to evaluate the festival in terms of its quality, benefits and areas for improvement. Descriptive statistics were used to analyse the evaluation data. 87 service users, carers, academics and professionals also engaged in a research prioritisation exercise to collaboratively determine mental health research priorities for Indonesia. Results Participants evaluated the festival extremely positively with a significant majority (92%) rating the quality of the festival as good or excellent. Attendees reported an increase in their understanding of mental health issues and identified intended behaviour change including an increased propensity for future engagement with mental health research. Key strengths of the festival included the central role of patients, carers and the local community in the design and delivery of the festival which promoted emotional engagement and development of shared understanding and the use of international experts which in attendees’ opinion further enhanced the credibility of festival activities. Conclusion This manuscript indicates that a co-produced mental health public engagement festival is a potentially acceptable way to increase awareness of mental health in Indonesian populations. Future festivals should be larger in scope and target men, older people and the general public to maximise benefit and incorporate rigorous evaluation of effectiveness.

Abstract Background Maintained study-based registers (SBRs) have, at their core, study records linked to, potentially, multiple other records such as references, data sets, standard texts and full-text reports. Such registers can minimise and refine searching, de-duplicating, screening and acquisition of full texts. SBRs can facilitate new review titles/updates and, within seconds, inform the team about the potential workload of each task. Methods We discuss the advantages/disadvantages of SBRs and report a case of how such a register was used to develop a successful grant application and deliver results—reducing considerable redundancy of effort. Results SBRs saved time in question-setting and scoping and made rapid production of nine Cochrane systematic reviews possible. Conclusion Whilst helping prioritise and conduct systematic reviews, SBRs improve quality. Those funding information specialists for literature reviewing could reasonably stipulate the resulting SBR to be delivered for dissemination and use beyond the life of the project.

Abstract Background There has been growing interest in the contribution of non-governmental organisations (NGOs) to international health research. One strength that NGOs may bring to research involves the potential value of service delivery experience for indicating relevant research questions, namely through their involvement in service delivery, NGO staff may be aware of frontline knowledge gaps, allowing these staff to identify questions that lead to research with immediate relevance. However, there is little empirical evidence on research agendas within NGOs to assess whether their service delivery experience does lead to relevant research or conditions that affect this. This article examines the identification and selection of research questions within NGOs to explore the role of their service delivery experience in generating relevant research agendas. Methods The article reports comparative case study research on four NGOs in Malawi, including two international and two Malawian organisations. Each NGO conducts research and undertakes service delivery and advocacy. Data collection included interviews, focus groups, observation and document review. Analysis involved thematic coding and use of diagrams. Results The case NGOs’ experiences suggest that using service delivery to identify research questions does not always match NGOs’ aims or capacities, and does not guarantee relevance. First, NGOs do not want to rely only on service delivery when developing research agendas; they consider other criteria and additional sources of ideas when selecting questions they see as relevant. Second, service delivery staff are not always well-placed to identify research topics; indeed, involvement in hectic, target-driven service delivery can hinder input to research agendas. Third, NGOs’ ability to pursue questions inspired by service delivery depends on control over their research agendas; relationships with external actors and financial autonomy affect NGOs’ capacity to undertake the research they see as relevant. Finally, the perceived relevance of research findings varies between audiences and depends on more than the research question. Conclusions The findings suggest limits to the value and feasibility of a research agenda based on service delivery experience. Based on the analysis, the conclusion outlines strategies to support an effective role for NGOs’ service delivery experience in development of research agendas.

Abstract Background Cochrane primarily aims to systematically review trials of effectiveness that are important to inform clinical decisions. Editorial groups support authors to achieve high-quality reviews and prioritise review proposals in their clinical domain that are submitted or elicited. Prioritising proposals requires two approaches, identifying (1) clinical practises for which the evidence of effectiveness is uncertain and (2) interventions in which there are trials of effectiveness (especially randomised controlled trials (RCTs)) not systematically reviewed. This study addresses this second approach for the Cochrane Acute Respiratory Infections Group (CARIG) in order to identify RCTs of acute respiratory infections that have not been systematically reviewed. Methods We exported, on the 9th of September 2014, and then compared the group’s trials register of RCTs against a list of current Cochrane ARI (systematic) Reviews to identify gaps in topics (the same intervention and health condition) where completed trials have not been systematically reviewed. We assigned a principle intervention and health condition to each of 157 Cochrane reviews (CRs) and 5393 RCTs. Results A majority of topics had been systematically reviewed; however, a substantial number (2174 or 41%) of RCTs were not included in any review. The topic that had been systematically reviewed the most was antibiotic vs placebo for pneumonia with 11 CRs and 205 RCTs. The topic that was the subject of most RCTs was vaccination for influenza with 525 RCTs and 6 CRs. Also, 6 CRs had no RCTs (‘empty reviews’). Conclusions We identified many RCT topics that have not been systematically reviewed. They need to be addressed in a separate process to establish their priority to clinicians.