People powered research: what do communities identify as important for happy and healthy children and young people? A multi-disciplinary community research priority setting exercise in the City of Bradford, United Kingdom (UK)

The evidence base that underlies the management of children and young people with paediatric rheumatic diseases is deficient. In this field, there are many crucial unanswered questions. The UK Paediatric Rheumatology Clinical Studies Group, supported by UK National Institute for Health Research Clinical Research Network: children and Versus Arthritis, elicited ideas for research priorities from paediatric rheumatologists, trainees, allied health-care professionals, nurse specialists, patients, parents of patients, carers, and charities. These ideas were collected through online surveys and face-to-face meetings. A modified Delphi process was used, which included online research priority ranking surveys and a consensus workshop. A longlist of 55 disease-specific research priorities and 37 general research priorities were voted on in the first survey. A list of 11 top general research priorities was produced. The top ten disease-specific research priorities were discussed in depth at a Delphi workshop to determine their final ranking. This Health Policy paper will help to guide clinicians, academics, and funding bodies to prioritise research in paediatric rheumatic diseases, specifically in areas of unmet patient needs.

Research priority setting aims to gain consensus about areas where research effort will have wide benefits to society. While general principles for setting health research priorities have been suggested, there has been no critical review of the different approaches used. This review aims to: (i) examine methods, models and frameworks used to set health research priorities; (ii) identify barriers and facilitators to priority setting processes; and (iii) determine the outcomes of priority setting processes in relation to their objectives and impact on policy and practice.Medline, Cochrane, and PsycINFO databases were searched for relevant peer-reviewed studies published from 1990 to March 2012. A review of grey literature was also conducted. Priority setting exercises that aimed to develop population health and health services research priorities conducted in Australia, New Zealand, North America, Europe and the UK were included. Two authors extracted data from identified studies.Eleven diverse priority setting exercises across a range of health areas were identified. Strategies including calls for submission, stakeholder surveys, questionnaires, interviews, workshops, focus groups, roundtables, the Nominal Group and Delphi technique were used to generate research priorities. Nine priority setting exercises used a core steering or advisory group to oversee and supervise the priority setting process. None of the models conducted a systematic assessment of the outcomes of the priority setting processes, or assessed the impact of the generated priorities on policy or practice. A number of barriers and facilitators to undertaking research priority setting were identified.The methods used to undertake research priority setting should be selected based upon the context of the priority setting process and time and resource constraints. Ideally, priority setting should be overseen by a multi-disciplinary advisory group, involve a broad representation of stakeholders, utilise objective and clearly defined criteria for generating priorities, and be evaluated.

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. 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. 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. 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. 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.

IntroductionThose with severe and enduring mental ill health are at greater risk of long‐term physical health conditions and have a reduced life expectancy as a result. Multiple factors compound this health inequality, and the need for setting research priorities in this area is highlighted with physical and mental healthcare services being separate, and limited multimorbidity research.MethodsThe aim of this exercise was to work in partnership with healthcare professionals and carers, family, friends and individuals with lived experience of both mental and physical health conditions, to set research priorities to help people with mental health conditions to look after their physical health. The exercise was guided by the James Lind Alliance approach. For this, a steering group was set up, two surveys were completed and a final priority workshop was conducted.ResultsThis priority setting exercise guided by people's needs and lived experience has produced a set of well‐defined research topics. Initially, 555 research questions were suggested in the first survey, which were refined to 54 questions for the second survey. A priority setting workshop was then conducted to get the final 10 priorities.ConclusionsTaking these topics forward to improve services and treatment for both mental and physical ill health may in turn improve physical health and lessen the reduced life expectancy of those living with mental ill health.Patient or Public ContributionThis work was completed in collaboration with people who have lived experience of mental ill health and physical health conditions, as well as carers, family and friends. Their contribution has been significant for this work from piloting surveys, amending language used and educating the researchers and contributing to this paper. The initial work was completed with a steering group and continued with surveys and workshops.

BackgroundBlack, 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.ObjectiveThe 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.MethodIncluded 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.ResultsOut 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.ConclusionsResearch 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.

The three papers by Norton, Pardey, and Alston (NPA), McCalla and Ryan (MR), and Just and Huffman (JH) address very different topics; therefore, any discussion of them should probably be mainly on an individual basis. There is, nonetheless, some common underlying perspective. NPA and MR acknowledge the difficulty in research priority setting when there are multiple objectives at stake. This gives rise to multiple trade-offs between economic efficiency, value of total output, equity, and sustainability. MR, addressing the research priority issue for the CGIAR system in a global context, add as another trade-off the consideration of the strengths of the national partners who collaborate with the CGIAR system. NPA add the complexity of setting research priorities across commodities, disciplines, geographical entities, and individual projects. JH point out the complex layering of modem science and technology which ranges from basic work in the so-called mother sciences, to pretechnology science, to applied sciences and, finally, to technology development and commercialization. Thus, there is a real danger in oversimplifying the R&D process and in overgeneralizing recommendations about research organization and priority setting. All three papers acknowledge the problem of shrinking real research funds. In the latter regard, some recent personal work has reminded me that in the U.S., for example, a 1975 agricultural research dollar was worth only about 37 cents in 1990. And over the last several years federal, and in some cases state, appropriations for agricultural research have been virtually constant in nominal dollars.

ObjectiveTo conduct the first UK-wide research priority setting project informing researchers and funders of critical knowledge gaps requiring investigation to improve the health and well-being of patients with eating, drinking...

BackgroundThis scoping review provides a thorough analysis of how stakeholders have so far been involved in research priority setting. The review describes, synthesizes, and evaluates research priority setting projects not only for the field of health—as previous reviews have done—but does so on a much broader scale for any research area.MethodsA comprehensive electronic literature search was conducted in the databases PubMed, Scopus, and Web of Science. Reflecting the importance of grey literature, Google Scholar and relevant websites were also screened for eligible publications. A computational approach was then used for the study selection. The final screening for inclusion was done manually.ResultsThe scoping review encompasses 731 research priority setting projects published until the end of 2020. Overall, the projects were conducted within the realm of 50 subject areas ranging from agriculture and environment over health to social work and technology. Key learnings include that nearly all priority setting projects aimed to identify research priorities for the field of health (93%), particularly for nursing and care, cancer, pediatrics, and mental, behavioral and neurodevelopmental disorders. Only 6% of the projects were not health-related and 1% identified research priorities at the interface between health and a non-health area. Over time, 30 different stakeholder groups took part in research priority setting. The stakeholders most frequently asked to identify research priorities were doctors, patients, academics/researchers, nurses, allied healthcare professionals, family members, friends, and carers. Nearly two thirds of all projects have been conducted in Europe and North America. Overall, only 9% of the projects emphasized the importance of stakeholders in their goals and rationales and actively involved them. In around a quarter of the projects, stakeholders deliberated on their research priorities throughout the entire process.ConclusionBy mapping out the complex landscape of stakeholder involvement in research priority setting, this review guides future efforts to involve stakeholders effectively, inclusively, and transparently, which in turn may increase the overall value of research for society. As a practical addition to this review, the first worldwide research priority setting database was created: https://ois.lbg.ac.at/en/project-database. The database contains all the projects analyzed for this review and is constantly updated with the latest published research priority setting projects.

Increasingly, there is a need for national governments, public-private partnerships, private sector and other funding agencies to set priorities in health research investments in a fair and transparent way. A process of priority setting is always an activity driven by values of wide range of stakeholders, which are often conflicting. This process always occurs in a highly specific context (eg, agreed policies and targets in terms of disease burden reduction and time limit, defined geographic space, population and specific health problems).

Patient- and public-driven health research: a model of co-leadership and partnership in research priority setting using a modified James Lind Alliance approach.

BackgroundResearch priority setting with stakeholders can help direct the limited resources for health research toward priority areas of need. Ensuring transparency of the priority setting process can strengthen legitimacy and credibility for influencing the research agenda. This study aims to develop a reporting guideline for priority setting of health research.MethodsWe searched electronic databases and relevant websites for sources (frameworks, guidelines, or models for conducting, appraising, reporting or evaluating health research priority setting, and reviews (including systematic reviews)), and primary studies of research priority setting to July 2019. We inductively developed a list of reporting items and piloted the preliminary guideline with a diverse range of 30 priority setting studies from the records retrieved.ResultsFrom 21,556 records, we included 26 sources for the candidate REPRISE framework and 455 primary research studies. The REporting guideline for PRIority SEtting of health research (REPRISE) has 31 reporting items that cover 10 domains: context and scope, governance and team, framework for priority setting, stakeholders/participants, identification and collection of priorities, prioritization of research topics, output, evaluation and feedback, translation and implementation, and funding and conflict of interest. Each reporting item includes a descriptor and examples.ConclusionsThe REPRISE guideline can facilitate comprehensive reporting of studies of research priority setting. Improved transparency in research priority setting may strengthen the acceptability and implementation of the research priorities identified, so that efforts and funding are invested in generating evidence that is of importance to all stakeholders.Trial registrationNot applicable.

IntroductionThere are many challenges encountered in the health technology assessment (HTA) of treatments for the management of neurodegenerative diseases like Alzheimer’s disease. A recent example where such challenges were visible was the assessment of aducanumab, a medication developed for Alzheimer’s disease. As part of the Innovative Medicines Initiative (IMI) Neuronet project, a series of workshops were held to understand the gaps in neurodegenerative disease research and identify the key research priorities, from the perspective of different stakeholders, that can inform decision-making and enable timely access to effective and safe treatments.MethodsThree workshops were organised by Neuronet to consult with HTA and regulatory experts, people with dementia and their supporters, and academic and industry researchers. The first consultation was with the European Working Group of People with Dementia and their supporters, and their feedback was fed into the following two workshops which were conducted with HTA and regulatory experts, and with researchers. Discussions during the workshops were used to develop a summary of the gaps in research, and priorities from the perspective of each stakeholder group to be submitted to IMI to inform future research funding allocation.ResultsKey priorities that were highlighted from an HTA and regulatory perspective were the collection of longitudinal data to understand the natural history of the disease, the generation of data on long-term clinical outcomes and the use of trial endpoints that are relevant to clinical practice. There is also a need for disease-modifying treatments that is yet to be met in this disease area. Furthermore, the involvement of the public, particularly people with dementia and relevant organisations, in setting research priorities and informing study designs was highlighted as a priority by all stakeholders.ConclusionsThere are key priorities for future neurodegenerative research from an HTA and regulatory perspective to address current gaps and challenges. It is important to involve different stakeholders in priority setting and decision-making to produce relevant and satisfactory research outputs.

BackgroundHealth Research Priority Setting (HRPS) in the Ministry of Health (MOH) Malaysia was initiated more than a decade ago to drive effort toward research for informed decision and policy-making. This study assessed the impact of funded prioritised research and identified research gaps to inform future priority setting initiatives for universal access and quality healthcare in Malaysia.MethodsResearch impact of universal access and quality healthcare projects funded by the National Institutes of Health Malaysia were assessed based on the modified Payback Framework, addressing categories of informing policy, knowledge production, and benefits to health and health sector. For the HRPS process, the Child Health and Nutrition Research Initiative methodology was adapted and adopted, with the incorporation of stakeholder values using weights and monetary allocation survey. Workshop discussions and interviews with stakeholders and research groups were conducted to identify research gaps, with the use of conceptual frameworks to guide the search.ResultsSeventeen ongoing and 50 completed projects were identified for research funding impact analysis. Overall, research fund allocation differed from stakeholders’ expectation. For research impact, 48 out of 50 completed projects (96.0%) contributed to some form of policy-making efforts. Almost all completed projects resulted in outputs that contributed to knowledge production and were expected to lead to health and health sector benefits. The HRPS process led to the identification of research priority areas that stemmed from ongoing and new issues identified for universal access and quality healthcare.ConclusionThe concerted efforts of evaluation of research funding impact, prioritisation, dissemination and policy-maker involvement were valuable for optimal health research resource utilisation in a resource constrained developing country. Embedding impact evaluation into a priority setting process and funding research based on national needs could facilitate health research investment to reach its potential.

Representing all population groups in health and social care research is essential for generating research relevant to decision making in everyday clinical and social healthcare policy and practice. Conducting research that is relevant to all, starts with ensuring equitable representation in research priority selection. This scoping review aimed to identify evidence of published and good practices in health and social care research priority-setting activities, which included people from ethnic minority backgrounds. The search was conducted using MEDLINE, CINAHL, Cochrane Library, PsycINFO, and Scopus databases, following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) guideline. Studies that reported including ethnic minority community members in health and social care research priority setting from 2010 were considered. The research priority processes were evaluated using a checklist of good practices in research priority settings. Forty-seven articles representing 12 countries and various health topics were included. Group discussion was the most common approach for conducting the research priority setting activities. No study addressed all 20 recommended research priority-setting good practice principles. Most studies provided sufficient information about the context of the priority-setting exercise. Examples of good practices included community advisory boards, local approaches to health research, and multi-disciplinary steering groups. Representation of ethnic minority populations' involvement in research across different countries and broader health and social care areas is limited. Recommendations to address these challenges are presented and could help inform researchers, funders, and policymakers to understand what health and social care research topics are prioritised by ethnic minority communities.

Detection of research priority is of key importance for the development of researchorganizations, universities, country, and society. The paper briefly reviews a range of issuesaccompanying the processes of research priority setting. These issues are primarily discussedin biomedical papers due to their utmost importance in the system of healthcare.The paper describes the main participants who set research priority including research organizationsand universities, grant funds, business companies and their investors, and governmentagencies. It is shown how relationships between participants can lead to a potential conflict of interest when prioritizing research. Resolution of conflicts at initial stages of researchpriority setting is especially important to maintain principles of fair competition, humanrights observance, development of collaboration, and enhancement of transparency inresearch. Problems of biased priority setting are detected toward international, basic, or hottopics, which requires the development of special criteria for each type of research. Issuesof dual-purpose research are studied from the perspective of publication ethics as they canresult in both advantages and damage for society. Modern approaches to research prioritysetting are reviewed. Methods of the detection of research trends and fronts are also brieflydescribed due to their impact on further priority setting. The mutual influence of researchfronts and research priority was shown. Tools for the detection of research trends and frontscomprise bibliometric analysis while research priority setting is significantly based on expertreview. Multiphase processes using various approaches seem to be the most promising inresearch priority setting.