A checklist for health research priority setting: nine common themes of good practice.
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ABSTRACT:
SUBMITTER: Viergever RF
PROVIDER: S-EPMC3018439 | biostudies-literature | 2010 Dec
REPOSITORIES: biostudies-literature
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A checklist for health research priority setting: nine common themes of good practice.
Viergever Roderik F RF Olifson Sylvie S Ghaffar Abdul A Terry Robert F RF
Health research policy and systems 20101215
Health research priority setting processes assist researchers and policymakers in effectively targeting research that has the greatest potential public health benefit. Many different approaches to health research prioritization exist, but there is no agreement on what might constitute best practice. Moreover, because of the many different contexts for which priorities can be set, attempting to produce one best practice is in fact not appropriate, as the optimal approach varies per exercise. Ther ...[more]
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Project description:Accountable decision-makers are required to legitimize their priority setting decisions in health to members of society. In this perspective we stress the point that fair, legitimate processes should reflect efforts of authorities to treat all stakeholders as moral equals in terms of providing all people with well-justified, reasonable reasons to endorse the decisions. We argue there is a special moral concern for being accountable to those who are potentially adversely affected by decisions. Health authorities need to operationalize this requirement into real world action. In this perspective, we operationalize five key steps in doing so, in terms of (i) proactively identifying potentially adversely affected stakeholders; (ii) comprehensively including them in the decision-making process; (iii) ensuring meaningful participation; (iv) communication of recommendations or decisions; and (v) the organization of evaluation and appeal mechanisms. Health authorities are advised to use a checklist in the form of 29 reflective questions, aligned with these five key steps, to assist them in the practical organization of legitimate priority setting in healthcare.
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Project description:BACKGROUND:Research 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. METHODS:We 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. RESULTS:From 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. CONCLUSIONS:The 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 REGISTRATION:Not applicable.
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Project description:Public sources fund the majority of UK infection research, but citizens currently have no formal role in resource allocation. To explore the feasibility and willingness of citizens to engage in strategic decision making, we developed and tested a practical tool to capture public priorities for research.A scenario including six infection themes for funding was developed to assess citizen priorities for research funding. This was tested over two days at a university public festival. Votes were cast anonymously along with rationale for selection. The scenario was then implemented during a three-hour focus group exploring views on engagement in strategic decisions and in-depth evaluation of the tool.188/491(38%) prioritized funding research into drug-resistant infections followed by emerging infections(18%). Results were similar between both days. Focus groups contained a total of 20 citizens with an equal gender split, range of ethnicities and ages ranging from 18 to >70 years. The tool was perceived as clear with participants able to make informed comparisons. Rationale for funding choices provided by voters and focus group participants are grouped into three major themes: (i) Information processing; (ii) Knowledge of the problem; (iii) Responsibility; and a unique theme within the focus groups (iv) The potential role of citizens in decision making. Divergent perceptions of relevance and confidence of "non-experts" as decision makers were expressed.Voting scenarios can be used to collect, en-masse, citizens' choices and rationale for research priorities. Ensuring adequate levels of citizen information and confidence is important to allow deployment in other formats.
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Project description:BACKGROUND:Communities' engagement in priority-setting is a key means for setting research topics and questions of relevance and benefit to them. However, without attention to dynamics of power and diversity, their engagement can be tokenistic. So far, there remains limited ethical guidance on how to share power with communities, particularly those considered disadvantaged and marginalised, in global health research priority-setting. This paper generates a comprehensive, empirically-based "ethical toolkit" to provide such guidance, further strengthening a previously proposed checklist version of the toolkit. The toolkit places community engagement and power-sharing at the heart of priority-setting for global health research projects. METHODS:A two part method was used to generate a revised toolkit. Part one was conceptual, consisting of novel analysis of empirical data (previously collected as part of the same overall project) to identify additional concepts relevant to power-sharing between researchers and communities in global health research priority-setting. Part two was empirical, seeking feedback on the initial checklist version of the toolkit in interviews with researchers, ethicists, community engagement practitioners, and community organisation staff. RESULTS:The conceptual process identified two additional components of engagement and six additional features that affect who defines, who participates, and who is heard in research priority-setting. New ethical considerations related to sharing power in global health research priority-setting are articulated in relation to those components and features. Interviewees provided suggestions for revising the toolkit's content and language. The implications of these suggestions and the analytic process for the toolkit are described. CONCLUSIONS:The resultant toolkit is a reflective project planning aid for researchers and their community partners to employ before priority-setting is undertaken for global health research projects. It consists of three worksheets (to be completed collectively) and a companion document detailing how to use them. It is more comprehensive than the initial toolkit, as worksheet questions for discussion cover all phases of priority-setting.
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Project description:BackgroundA review of research priorities completed by WHO technical units was undertaken. Results of the mapping were recorded in a database that was used to generate analysis and compare research priorities and the different methodological approaches used in their development.MethodsA total of 116 documents were reviewed for this study. The documents were published between 2002 and 2017 by the technical programmes of WHO headquarters and deposited in the institutional repository, IRIS. Research priorities were extracted from documents into a standard template and mapped to a five-category research cycle type framework defined in the WHO Strategy on Research for Health covering research to describe the research problem, identifying the cause and risk factors, developing solutions and new interventions, understanding the barriers to implementation, and evaluation of the impact of response. Details of the research priority methods were recorded. A database with user interface was created using Microsoft Excel 2010.ResultsA total of 2145 research priorities were extracted from the 116 documents meeting the inclusion criteria. The priorities specifically address 73 diseases/health topics. The document types were 26% Report, 22% WHO Guideline, 26% Research Prioritisation publication and 11% Meeting Notes. The most widely reported method used to identify priorities was expert consultation. Expert consultation was used to identify 86% of the priorities categorised here, with 26% (561) reporting it as the sole method; 52% (1111) explicitly listed a literature review as contributing to the identification of priorities. When the 2145 priorities were categorised across the research cycle framework, the largest portion (43%) addressed implementation challenges. The database is published here under an open access licence.ConclusionComparing research priorities between diseases/health topics requires standardisation and the research cycle type framework is one approach that can be applied across all the health topics found in public health. There is great variation in the use of research priority-setting methodology at WHO Headquarters. Therefore, a standard reporting approach, linked to established good practice, should be an area for future development by the WHO Global Health R&D Observatory. The database reported here can also be used to quickly access and analyse the research priorities for a specific health topic or to compare across a range of health topics.
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Project description:BACKGROUND:Methodological research into the design, conduct, analysis and reporting of trials is essential to optimise the process. UK specialists in the field have established a set of top priorities in aid of this research. These priorities, however, may not be reflected in the needs of similar research in low- to middle-income countries (LMICs) with different healthcare provision, resources and research infrastructure. The aim of the study was to identify the top priorities for methodological research in LMICs to inform further research and ultimately to improve clinical trials in these regions. METHODS:An online, two-round survey was conducted from December 2016 to April 2017 amongst researchers and methodologists working on trials in LMICs. The first round required participants to suggest between three and six topics which they felt were priorities for trial methodological research in LMICs. The second round invited participants to grade the importance of a compulsory list of topics suggested by four or more individuals, and an optional list of the remaining topics. FINDINGS:Rounds 1 and 2 were completed by 412 and 314 participants, respectively. A wide spread of years of experience, discipline, current country of residence, origin of trials training and area of involvement in trials was reported. The topics deemed most important for methodological research were: choosing appropriate outcomes to measure and training of research staff. CONCLUSION:By presenting these top priorities we have the foundations of a global health trials methodological research agenda which we hope will foster future research in specific areas in order to increase and improve trials in LMICs.
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Project description:Evidence-based practice provides the foundation for high quality patient care, and in the NHS, research is seen as vital to enable service transformation and improve outcomes. Research is one of the four pillars of enhanced and advanced clinical practice and is therefore a fundamental part of podiatric surgery services. In order to meet the UK health research strategies, the most recent being 'Saving and Improving Lives: The Future of UK Clinical Research Delivery' (2021), the Faculty of Podiatric Surgery in the UK agreed to support the development of research priorities in order to inform a future research strategy.The Podiatric Surgery Research Strategy Group was set up and embarked on a project with the aim of engaging its members in formulating and agreeing national research priorities. The initial stage included a national research scoping survey to identify key themes, topic, and research questions. The final stage consisted of developing and enabling a live consensus vote conducted at the 2022 national Faculty of Podiatric Surgery Conference. At the end of the vote, the top five research topics that met the agreement criteria were: 1. Surgical treatment - forefoot, 2. Patient reported outcome measures, 3. Post-operative management, 4. Surgical treatment - midfoot and 5. Service delivery. The top five research questions that met the criteria were1. How does quality of life improve following elective foot surgery? 2. How does podiatric surgery benefit the health of the population? 3. How does podiatric surgery benefit the health of the population in the at-risk foot? 4. What is the most effective Lapidus fixation option? and 5. What is the benefit of utilising PASCOM-10 to improve large scale outcome data? These will inform the initial UK podiatric surgery research priorities in the next three to five years.
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Project description:Countries around the world are experiencing an ever-increasing need to make choices in investments in health and healthcare. This makes it incumbent upon them to have formal processes in place to optimize the legitimacy of eventual decisions. There is now growing experience among countries of the implementation of stakeholder participation, and a developing convergence of methods to support decision-makers within health authorities in making tough decisions when faced with the stark reality of limited resources. We call for further interaction among health authorities, and the research community to develop best practices in order to confront the difficult choices that need to be made.
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Project description:Plain english summaryBackground Patient and public involvement means researchers working with members of the public, patients or carers to jointly plan and carry out research.Aim This article is written by members of three involvement groups, and the university employees that they work with. We wanted to jointly reflect on what enables our collaborative work, and what the challenges are for everyone involved.What we did and how we did it We wanted to establish what the literature defines as 'good' public involvement and compare this with processes and practices in our involvement groups. We therefore carried out a literature review and each group met separately to discuss what characterises good involvement, and what the challenges are. From these discussions we developed a set of descriptions about each group. We compared the literature review findings with what came out of the discussions within the involvement groups.Findings Some of the involvement principles from the literature were similar to the priorities of the involvement groups. In addition, the groups identified characteristics of 'good' involvement practice that were not reported in the literature: passion and enthusiasm, informal and welcoming meeting spaces, and opportunities to share lived experiences. In this article we present examples of how principles for good involvement are practiced in these groups, and difficulties we have experienced.AbstractBackground Patient and public involvement is important for producing relevant and accessible health research. Evidence of impact from involvement is growing, but there is also a need for research on how to create conditions for meaningful collaborations between researchers and public advisers.Objective We report on a co-produced self-reflective evaluation of involvement practices in three UK research programmes.Methods A structured review identified research-based principles for 'good' public involvement in research. In parallel, members of three involvement groups co-developed statements on how the groups work, and enablers and challenges to collaborative research. The author team analysed these statements using the findings from the review.Results We identified 11 international articles reporting research-based principles for involvement published between 2013 and 2017. We identified five 'values' and seven 'practice principles' for 'good' involvement. There was convergence between these principles and the priorities of the involvement groups. But the groups also identified additional good involvement practice that were not reported by the literature: passion, enthusiasm, informal and welcoming meeting spaces, and opportunities to share lived experiences. We present examples of how principles for good involvement are practiced in these groups, and highlight principles that have been challenging to implement.Conclusions Ongoing appraisal of public involvement is crucial. We present a process for self-evaluation, illuminate what 'good' means to researchers and public advisers involved in research, and identify areas for improvement. We conclude that provision of resources that enable support to public advisers in turn enable universities and research teams to implement other principles of good involvement.
| S-EPMC7110674 | biostudies-literature
Project description: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.
| S-EPMC8555197 | biostudies-literature