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Involving citizens in priority setting for public health research: Implementation in infection research.

ABSTRACT: 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.

SUBMITTER: Rawson TM

PROVIDER: S-EPMC5750690 | biostudies-other | 2018 Feb

REPOSITORIES: biostudies-other

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Involving citizens in priority setting for public health research: Implementation in infection research.

Rawson Timothy M TM Castro-Sánchez Enrique E Charani Esmita E Husson Fran F Moore Luke S P LSP Holmes Alison H AH Ahmad Raheelah R

Health expectations : an international journal of public participation in health care and health policy 20170721 1

<h4>Background</h4>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.<h4>Method</h4>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 universi ...[more]

PMID: 28732138

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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.

Project description:BackgroundThe Kenyan government has successfully been implementing sector specific and multisectoral projects aligned to the Global Health Security Agenda (GHSA). For operational readiness and to enhance the effective planning and implementation of Global Health Security Programs (GHSP) at national and subnational level, there is an urgent need for stakeholders' engagement process to seek input in identifying challenges, prioritise activities for field implementation, and identify applied research and development questions, that should be addressed in the next five years.MethodsThe modified Child Health and Nutrition Research Initiative (CHNRI) method was used to identify global health security related priorities for multisectoral implementation in Kenya. Subject matter experts from human, animal and environmental health sectors at national and subnational level contributed to predefined research questions from a number of sources and activities for consideration for implementation using a One Health approach. Sixty-two experts scored the 193 questions based on five pre-defined criteria: 1) feasibility and answerability; 2) potential for burden reduction; 3) potential for a paradigm shift; 4) potential for translation and implementation; and 5) impact on equity. Data resulting from this process was then analysed in a Microsoft Excel spreadsheet to determine the research priorities and experts' agreements.ResultsAmong the priority activities identified for implementation research were; strengthening One Health governance and legal frameworks; integration of ecosystem health into One Health programming; strengthening disease reporting, integrated data collection, information sharing and joint outbreak response; socio-anthropological and gender-based approaches in improving risk and behavioural change communication and community engagement; and one health workforce development. In addition, the potentials to invest in collaborative predictive risk modelling to enhance epidemic intelligence systems, while strengthening the One Health approach in the food safety incident and emergency response plans are feasible.InterpretationSuccessful multisectoral implementation of global health security program in Kenya calls for a whole of society approach that will harness community and private sector knowledge to build preparedness and response capacities while targeting neglected and marginalised populations. This research provides a framework that is worth emulating for cost-effective planning and implementation of overarching One Health programs.

Project description:BackgroundResearch priority setting (RPS) studies are necessary to close the significant gap between the scientific evidence produced and the evidence stakeholders need. Their findings can make resource allocation in research more efficient. However, no general framework for conducting an RPS study among public health stakeholders exists. RPS studies in public health are rare and no such study has been previously conducted and published in Germany. Therefore, we aimed to investigate which research topics in public health are prioritised by relevant stakeholders in Germany.MethodsOur RPS study consisted of a scoping stage and a Delphi stage each split into two rounds. Firstly, we invited members of the German Public Health Association to gather expert insights during two initial workshops. Next, we defined the relevant stakeholder groups and recruited respondents. Thereafter, we collected research topics and assessment criteria with the respondents in the first Delphi round and aggregated the responses through content analysis. Finally, we asked the respondents to rate the research topics with the assessment criteria in the second Delphi round.ResultsIn total, 94 out of the 140 invited public health organisations nominated 230 respondents for the Delphi study of whom almost 90% participated in both Delphi rounds. We compiled a comprehensive list of 76 research topics that were rated and ranked by several assessment criteria. We split the research topics into two types, substantive research topics and methodological-theoretical research topics respectively, to ensure the comparability among the research topics. In both types of research topics-substantive research topics and methodological-theoretical research topics-the respective top five ranked research topics hardly differed between public health researchers and public health practitioners. However, clear differences exist in the priority ranking of many (non-top priority) research topics between the stakeholder groups.ConclusionsThis research demonstrates that it is possible, with limited resources, to prioritise research topics for public health at the national level involving a wide range of pertinent stakeholders. The results can be used by research funding institutions to initiate calls for research projects with an increased relevance for health and/or scientific progress.

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.

Project description:BackgroundDigital contact tracing and exposure notification apps have quickly emerged as a potential solution to achieve timely and effective contact tracing for the SARS-CoV-2 virus. Nonetheless, their actual uptake remains limited. Citizens, including patients, are rarely consulted and included in the design and implementation process. Their contribution supports the acceptability of such apps, by providing upstream evidence on incentives and potential barriers that are most relevant to users. The DIGICIT (DIGITal CITizenship) project relied on patient and citizen partnership in research to better integrate public perspectives on these apps. In this paper, we present the co-construction process that led to the survey instrument used in the DIGICIT project and the interpretation of its results. This approach promotes public participation in research on contact tracing and exposure notification apps, as well as related digital health applications.ObjectivesThis article has three objectives: (1) describe the methodological process to co-construct a questionnaire and interpret the survey results with patients and citizens, (2) assess their experiences regarding this methodology, and (3) propose best practices for their involvement in digital health research.MethodsThe DIGICIT project was developed in four steps: (1) creation of the advisory committee composed of patients and citizens, (2) co-construction of a questionnaire, (3) interpretation of survey results, and (4) assessment of the experience of committee participants.ResultsOf the 25 applications received for participation in the advisory committee, we selected 12 people based on pre-established diversity criteria. Participants initially generated 84 survey questions in the first co-construction meeting, and eventually selected 36 in the final version. Participants made more than 20 recommendations when interpreting survey results and suggested carrying out focus groups with marginalized populations to increase representativity. They appreciated their inclusion early in the research process, being listened to and respected, the collective intelligence, and the method used for integrating their suggestions. They suggested that the study objectives and roles be better defined, that more time in the brainstorming sessions be allowed, and that discussion outside of meetings be encouraged.ConclusionHaving patients and citizens actively participating in this research constitutes the main methodological strength. They enriched the study from start to finish, and recommended the addition of focus groups to seek the perspective of marginalized groups that are typically under-represented from digital health research. Clear communication of the project objectives, good organization in meetings, and continuous evaluation from participants allow best practices to be achieved for patients' and citizens' involvement in digital health research. Co-construction in research generates critical study design ideas through collective intelligence. This methodology can be used in various clinical contexts and different healthcare settings.

Dataset Information

Involving citizens in priority setting for public health research: Implementation in infection research.

Publications

Involving citizens in priority setting for public health research: Implementation in infection research.

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