Research priority setting in obesity: a systematic review

Aim Obesity research priority setting, if conducted to a high standard, can help promote policy-relevant and efficient research. Therefore, there is a need to identify existing research priority setting studies conducted in the topic area of obesity and to determine the extent to which they followed good practice principles for research priority setting. Method Studies examining research priority setting in obesity were identified through searching the MEDLINE, PBSC, CINAHL, PsycINFO databases and the grey literature. The nine common themes of good practice in research priority setting were used as a methodological framework to evaluate the processes of the included studies. These were context, use of a comprehensive approach, inclusiveness, information gathering, planning for implementation, criteria, methods for deciding on priorities, evaluation and transparency. Results Thirteen articles reporting research prioritisation exercises conducted in different areas of obesity research were included. All studies reported engaging with various stakeholders such as policy makers, researchers and healthcare professionals. Public involvement was included in six studies. Methods of research prioritisation commonly included both Delphi and nominal group techniques and surveys. None of the 13 studies fulfilled all nine of the good practice criteria for research priority setting, with the most common limitations including not using a comprehensive approach and lack of inclusivity and evaluating on their processes. Conclusion There is a need for research priority setting studies in obesity to involve the public and to evaluate their exercises to ensure they are of high quality.

Concomitant health benefits package design and research prioritisation: development of a new approach and an application to Malawi

Health benefits packages (HBPs) are increasingly used in many countries to guide spending priorities on the path towards universal health coverage. Their design is, however, informed by an uncertain evidence base but research funds available to address this are limited. This gives rise to the question of which piece of research relating to the cost-effectiveness of interventions would most contribute to improving resource allocation. We propose to incorporate research prioritisation as an integral part of HBP design. We have, therefore, developed a framework and a freely available companion stand-alone tool, to quantify in terms of net disability-adjusted life-years (DALYs) averted, the value of research for the interventions considered for inclusion in a package. Using the tool, the framework can be implemented using sensitivity analysis results typically reported in cost-effectiveness studies. To illustrate the framework, we applied the tool to the evidence base that informed the Malawi Health Sector Strategic Plan 2017–2022. Out of 21 interventions considered, 8 investment decisions were found to be uncertain and three showed strong potential for research to generate large health gains: ‘male circumcision’, ‘community-management of acute malnutrition in children’ and ‘isoniazid preventive therapy in HIV +individuals’, with a potential to avert up to 65 762, 36 438 and 20 132 net DALYs, respectively. Our work can help set research priorities in resource-constrained settings so that research funds are invested where they have the largest potential to impact on the population health generated via HBPs.

924The landscape of clinical trial activity focusing on Indigenous health in Australia from 2008-2018

Background There are major health disparities between Indigenous and non-Indigenous Australians. To address this, it is vital to understand the landscape of Indigenous trial activity. Methods We extracted data from all Australian trials registered between 2008-2018 on the Australian New Zealand Clinical Trials Registry or ClinicalTrials.gov. Indigenous-focused trials were identified by searching for relevant terms such as ‘Indigenous’ and ‘Aboriginal’. Indigenous versus non-Indigenous trials and Australian trials overall were compared by conditions studied, intervention type, study design and funding. Results Of the 9206 included trials, 139 (1.5%) focused on Indigenous health, and these were mostly in ‘Public Health’ (n = 69, 50%), ‘Mental Health’ (n = 35, 25%) and ‘Cardiovascular’ (n = 25, 18%) (Figure). Compared to other Australian trials, Indigenous trials more frequently studied ear conditions (OR 16.47, 95%CI=8.43-29.99) and public health (OR 4.87, 95%CI=3.65-6.41), and were more likely to focus on screening (OR 3.57, 95%CI=2.10-5.70) and prevention (OR 2.24, 95%CI=1.61-3.08) rather than treatment (OR 0.40, 95%CI =0.30-0.52). They were less likely to be blinded (OR 1.72, 95%CI=1.20-2.49), or have any industry involvement (OR 2.52, 95%CI=1.54-4.43). Conclusions Indigenous trials differed from other Australian trials in health conditions studied, intervention focus, blinding and industry involvement. Relative to population size and burden of disease, the number of trials focusing on Indigenous health is low. Key messages Trial registries can be used to explore whether research appropriately addresses diverse populations such as Indigenous Australians. This can inform future research prioritisation.

Impacts of COVID-19 on clinical research in the UK: A multi-method qualitative case study

Background Clinical research has been central to the global response to COVID-19, and the United Kingdom (UK), with its research system embedded within the National Health Service (NHS), has been singled out globally for the scale and speed of its COVID-19 research response. This paper explores the impacts of COVID-19 on clinical research in an NHS Trust and how the embedded research system was adapted and repurposed to support the COVID-19 response. Methods and findings Using a multi-method qualitative case study of a research-intensive NHS Trust in London UK, we collected data through a questionnaire (n = 170) and semi-structured interviews (n = 24) with research staff working in four areas: research governance; research leadership; research delivery; and patient and public involvement. We also observed key NHS Trust research prioritisation meetings (40 hours) and PPI activity (4.5 hours) and analysed documents produced by the Trust and national organisation relating to COVID-19 research. Data were analysed for a descriptive account of the Trust’s COVID-19 research response and research staff’s experiences. Data were then analysed thematically. Our analysis identifies three core themes: centralisation; pace of work; and new (temporary) work practices. By centralising research prioritisation at both national and Trust levels, halting non-COVID-19 research and redeploying research staff, an increased pace in the setup and delivery of COVID-19-related research was possible. National and Trust-level responses also led to widescale changes in working practices by adapting protocols and developing local processes to maintain and deliver research. These were effective practical solutions borne out of necessity and point to how the research system was able to adapt to the requirements of the pandemic. Conclusion The Trust and national COVID-19 response entailed a rapid large-scale reorganisation of research staff, research infrastructures and research priorities. The Trust’s local processes that enabled them to enact national policy prioritising COVID-19 research worked well, especially in managing finite resources, and also demonstrate the importance and adaptability of the research workforce. Such findings are useful as we consider how to adapt our healthcare delivery and research practices both at the national and global level for the future. However, as the pandemic continues, research leaders and policymakers must also take into account the short and long term impact of COVID-19 prioritisation on non-COVID-19 health research and the toll of the emergency response on research staff.

A systematic review to identify research priority setting in Black and minority ethnic health and evaluate their processes

Background Black, Asian and minority ethnic communities suffer from disproportionately poorer health than the general population. This issue has been recently exemplified by the large numbers of infection rates and deaths caused by covid-19 in BAME populations. Future research has the potential to improve health outcomes for these groups. High quality research priority setting is crucial to effectively consider the needs of the most vulnerable groups of the population. Objective The purpose of this systematic review is to identify existing research priority studies conducted for BAME health and to determine the extent to which they followed good practice principles for research priority setting. Method Included studies were identified by searching Medline, Cinnahl, PsychINFO, Psychology and Behavioral Sciences Collection, as well as searches in grey literature. Search terms included “research priority setting”, “research prioritisation”, “research agenda”, “Black and minority ethnic”, “ethnic group”. Studies were included if they identified or elicited research priorities for BAME health and if they outlined a process of conducting a research prioritisation exercise. A checklist of Nine Common Themes of Good Practice in research priority setting was used as a methodological framework to evaluate the research priority processes of each study. Results Out of 1514 citations initially obtained, 17 studies were included in the final synthesis. Topic areas for their research prioritisation exercise included suicide prevention, knee surgery, mental health, preterm birth, and child obesity. Public and patient involvement was included in eleven studies. Methods of research prioritisation included workshops, Delphi techniques, surveys, focus groups and interviews. The quality of empirical evidence was diverse. None of the exercises followed all good practice principles as outlined in the checklist. Areas that were lacking in particular were: the lack of a comprehensive approach to guide the process; limited use of criteria to guide discussion around priorities; unequal or no representation from ethnic minorities, and poor evaluation of their own processes. Conclusions Research priority setting practices were found to mostly not follow good practice guidelines which aim to ensure rigour in priority setting activities and support the inclusion of BAME communities in establishing the research agenda. Research is unlikely to deliver useful findings that can support relevant research and positive change for BAME communities unless they fulfil areas of good practice such as inclusivity of key stakeholders’ input, planning for implementation of identified priorities, criteria for deciding on priorities, and evaluation of their processes in research priority setting.

Building a trusted framework for uncertainty assessment in rare diseases: suggestions for improvement (Response to “TRUST4RD: tool for reducing uncertainties in the evidence generation for specialised treatments for rare diseases”)

The aim of this letter to the editor is to provide a comprehensive summary of uncertainty assessment in Health Technology Assessment, with a focus on transferability to the setting of rare diseases. The authors of “TRUST4RD: tool for reducing uncertainties in the evidence generation for specialised treatments for rare diseases” presented recommendations for reducing uncertainty in rare diseases. Their article is of great importance but unfortunately suffers from a lack of references to the wider uncertainty in Health Technology Assessment and research prioritisation literature and consequently fails to provide a trusted framework for decision-making in rare diseases. In this letter to the editor we critique the authors’ tool and provide pointers as to how their proposal can be strengthened. We present references to the literature, including our own tool for uncertainty assessment (TRUST; unrelated to the authors’ research), apply TRUST to two assessments of orphan drugs in rare diseases and provide a broader perspective on uncertainty and risk management in rare diseases, including a detailed research agenda.