Causes, Consequences, and Treatments of Sleep and Circadian Disruption in the ICU: An Official American Thoracic Society Research Statement.

Background: Sleep and circadian disruption (SCD) is common and severe in the ICU. On the basis of rigorous evidence in non-ICU populations and emerging evidence in ICU populations, SCD is likely to have a profound negative impact on patient outcomes. Thus, it is urgent that we establish research priorities to advance understanding of ICU SCD. Methods: We convened a multidisciplinary group with relevant expertise to participate in an American Thoracic Society Workshop. Workshop objectives included identifying ICU SCD subtopics of interest, key knowledge gaps, and research priorities. Members attended remote sessions from March to November 2021. Recorded presentations were prepared and viewed by members before Workshop sessions. Workshop discussion focused on key gaps and related research priorities. The priorities listed herein were selected on the basis of rank as established by a series of anonymous surveys. Results: We identified the following research priorities: establish an ICU SCD definition, further develop rigorous and feasible ICU SCD measures, test associations between ICU SCD domains and outcomes, promote the inclusion of mechanistic and patient-centered outcomes within large clinical studies, leverage implementation science strategies to maximize intervention fidelity and sustainability, and collaborate among investigators to harmonize methods and promote multisite investigation. Conclusions: ICU SCD is a complex and compelling potential target for improving ICU outcomes. Given the influence on all other research priorities, further development of rigorous, feasible ICU SCD measurement is a key next step in advancing the field.

Engaging women to set the research agenda for assisted vaginal birth.

INTRODUCTION: Public and patient involvement can provide crucial insights to optimise research by enhancing relevance and appropriateness of studies. The World Health Organization (WHO) engaged in an inclusive process to ensure that both technical experts and women had a voice in defining the research gaps and needs to increase or reintroduce the use of assisted vaginal birth (AVB) in settings where this intervention is needed but unavailable or underused. METHODS: We describe the methods and outcomes of online workshops led by WHO to obtain women representatives' perspectives about AVB research gaps and needs. RESULTS: After technical experts created a list of research questions based on various evidence syntheses, WHO organised four online workshops with 31 women's representatives from 27 mostly low- and middle-income (LMIC) countries. Women rated the importance and priority of the research questions proposed by the technical experts, improving and broadening some of them, added new questions, and voiced their main concerns and views about AVB. Women helped to put the research questions into context in their communities, highlighted neglected factors/dimensions that influence practices and affect women's experience during labour and childbirth, underscored less salient consequences of AVB, and highlighted the main concerns of women about research on AVB. The consolidated vision of technical experts and women's representatives resulted in a technical brief published by WHO. The technical brief is expected to stimulate global research and action closely aligned with women's priorities. CONCLUSIONS: We describe a successful experience of engaging women, mostly from LMICs, in the identification of research gaps and needs to reintroduce AVB use. This process contributed to better aligning research questions with women's views, concerns, and priorities. Given the scarcity of reports about engaging women from LMICs to optimise research, this successful experience can serve as an inspiration for future work. PATIENT OR PUBLIC CONTRIBUTION: Women representatives were involved at every stage of the workshops described in full in this manuscript.

Co-creating a global shared research agenda on violence against women in low- and middle-income countries.

BACKGROUND: Despite a large growth in evidence on violence against women (VAW) over the last 25 years, VAW persists, as do gaps in the field's knowledge of how to prevent and respond to it. To ensure that research on VAW in low- and middle-income countries (LIMCs) is addressing the most significant gaps in knowledge, and to prioritise evidence needs to reduce VAW and better support victims/survivors, the Sexual Violence Research Initiative (SVRI) and Equality Institute (EQI) led a process of developing a global shared research agenda (GSRA) on VAW in LMICs. METHODS: The GSRA was developed through a six-stage adaptation of the Child Health and Nutrition Research Initiative (CHNRI) method, which draws on the principle of the 'wisdom of the crowd'. These steps included: a review of the literature on VAW in LMICs and development of domains; the generation of research questions within four domains by an Advisory Group; the consolidation of research questions; scoring of research questions by a Global Expert Group and the Advisory Group according to three criteria (applicability, effectiveness and equity); consultation and validation of the findings with the Advisory Group; and wide dissemination of the findings. RESULTS: The highest ranked research questions in the GSRA pertain to the domain of Intervention research, with some highly ranked questions also pertaining to the domain of Understanding VAW in its multiple forms. Questions under the other two domains, Improving existing interventions, and Methodological and measurement gaps, were not prioritised as highly by experts. There was strong consistency in top ranked research questions according to experts' characteristics, albeit with some important differences according to experts' gender, occupation and geographical location. CONCLUSIONS: The GSRA findings suggest that currently the VAW field is shifting towards intervention research after several decades of building evidence on understanding VAW, including prevalence, drivers and impacts of violence. The findings also suggest a strong emphasis on under-served populations, and under-researched forms of VAW. Future priority setting exercises in LMICs that seek to decolonise knowledge should ensure that methodologies, and modalities of engagement, put diverse voices at the centre of engagement. Trial registration Not applicable.

Identifying the asthma research priorities of people with asthma, their carers and other stakeholders.

BACKGROUND AND OBJECTIVE: People living with asthma, their carers, clinicians and policymakers are the end-users of research and need research that address their individual healthcare needs. We aimed to understand the research priorities of end-users of asthma research. METHODS: A national cross-sectional mixed-methods study was conducted. The study included an online survey that engaged patients, carers, healthcare professionals and policymakers to provide statements to free-text questions about what they would like to see answered by research to improve living with asthma on a day-to-day basis. Responses where thematically analysed followed by three online priority setting consensus workshops. RESULTS: There were 593 respondents who provided 1446 text comments. Participants prioritized 10 asthma research themes which were: (1) asthma in children, (2) COVID 19 and asthma, (3) asthma care and self-management, (4) diagnosis and medication, (5) managing asthma attacks, (6) causes, prevention and features of asthma, (7) mental health, (8) asthma and ageing, (9) severe asthma, (10) asthma and other health conditions. Each theme comprises specific research questions. CONCLUSION: This project successfully established 10 priority research themes for asthma, reflecting the collective voice of the end-users of this research. These novel data can be used to address the documented mismatch in research prioritization between the research community and the end-users of research.

Global research priorities related to the World Health Organization Labour Care Guide: results of a global consultation.

BACKGROUND: The World Health Organization (WHO) published the WHO Labour Care Guide (LCG) in 2020 to support the implementation of its 2018 recommendations on intrapartum care. The WHO LCG promotes evidence-based labour monitoring and stimulates shared decision-making between maternity care providers and labouring women. There is a need to identify critical questions that will contribute to defining the research agenda relating to implementation of the WHO LCG. METHODS: This mixed-methods prioritization exercise, adapted from the Child Health and Nutrition Research Initiative (CHNRI) and James Lind Alliance (JLA) methods, combined a metrics-based design with a qualitative, consensus-building consultation in three phases. The exercise followed the reporting guideline for priority setting of health research (REPRISE). First, 30 stakeholders were invited to submit online ideas or questions (generation of research ideas). Then, 220 stakeholders were invited to score "research avenues" (i.e., broad research ideas that could be answered through a set of research questions) against six independent and equally weighted criteria (scoring of research avenues). Finally, a technical working group (TWG) of 20 purposively selected stakeholders reviewed the scoring, and refined and ranked the research avenues (consensus-building meeting). RESULTS: Initially, 24 stakeholders submitted 89 research ideas or questions. A list of 10 consolidated research avenues was scored by 75/220 stakeholders. During the virtual consensus-building meeting, research avenues were refined, and the top three priorities agreed upon were: (1) optimize implementation strategies of WHO LCG, (2) improve understanding of the effect of WHO LCG on maternal and perinatal outcomes, and the process and experience of labour and childbirth care, and (3) assess the effect of the WHO LCG in special situations or settings. Research avenues related to the organization of care and resource utilization ranked lowest during both the scoring and consensus-building process. CONCLUSION: This systematic and transparent process should encourage researchers, program implementers, and funders to support research aligned with the identified priorities related to WHO LCG. An international collaborative platform is recommended to implement prioritized research by using harmonized research tools, establishing a repository of research priorities studies, and scaling-up successful research results.

What are the research priorities for strengthening public health emergency preparedness and response in Africa?

BACKGROUND: Research evidence is needed to strengthen capacities in emergency preparedness and response (EPR). However, the absence of a clear research agenda limits the optimal use of research evidence. This paper reports on the prioritization of research questions and topics that could contribute to evidence-informed strengthening of EPR capacities in the African region. METHODS: The priority-setting consisted of desk review and stakeholder consultation workshop. Twenty-nine people participated in the workshop, including representatives from WHO regional office and EPR focal points in Africa, representatives of research institutions, and partners from Science for Africa Foundation, United Nations Children's Fund and Africa Center for Disease Control. Modified Delphi technique was used to systematically arrive at specific and cross-cutting research priorities in the three broad areas of the EPR, which are program Implementation, Clinical and Epidemiology. The research questions/topics were ranked on five-point Likert scale (1 = very low to 5 = very high) based on seven agreed-on criteria. Research priority score was calculated for each question as the mean of the criteria scores. RESULTS: A total of 123 research questions comprising, 29 on Epidemiology, 22 on Clinical, 23 on program Implementation, and 49 on cross-cutting issues were ranked. The top ten research priorities were: knowledge and skills of healthcare workers in detecting and responding effectively to disease outbreaks; quality of data (accuracy, timeliness, completeness) for epidemic prone diseases; determinants of vaccine hesitancy; determinants of infection transmission among health care workers during PHE; effective measures for protecting health workers from highly infectious pathogens in PHE; strategies to improve the effectiveness of contact tracing for epidemic prone diseases; effectiveness of current case definitions as screening tools for epidemic and pandemic prone diseases; measures to strengthen national and sub-national laboratory capacity for timely disease confirmation within the Integrated Diseases Surveillance and Response framework; factors affecting prompt data sharing on epidemic-prone diseases; and effective strategies for appropriate community participation in EPR. CONCLUSIONS: The collaborative multi-stakeholder workshop produced a starting list of priority research questions and topics for strengthening EPR capacities in Africa. Action needs to be taken to continuously update the research agenda and support member States to contextualize the research priorities and commission research for timely generation and uptake of evidence.

Methodological procedures for priority setting mental health research: a systematic review summarising the methods, designs and frameworks involved with priority setting.

BACKGROUND: Research priority setting aims to identify research gaps within particular health fields. Given the global burden of mental illness and underfunding of mental health research compared to other health topics, knowledge of methodological procedures may raise the quality of priority setting to identify research with value and impact. However, to date there has been no comprehensive review on the approaches adopted with priority setting projects that identify mental health research, despite viewed as essential knowledge to address research gaps. Hence, the paper presents a summary of the methods, designs, and existing frameworks that can be adopted for prioritising mental health research to inform future prioritising projects. METHOD: A systematic review of electronic databases located prioritisation literature, while a critical interpretive synthesis was adopted whereby the appraisal of methodological procedures was integrated into the synthesis of the findings. The synthesis was shaped using the good practice checklist for priority setting by Viergever and colleagues drawing on their following categories to identify and appraise methodological procedures: (1) Comprehensive Approach-frameworks/designs guiding the entire priority setting; (2) Inclusiveness -participation methods to aid the equal contribution of stakeholders; (3) Information Gathering-data collecting methods to identify research gaps, and (4) Deciding Priorities-methods to finalise priorities. RESULTS: In total 903 papers were located with 889 papers removed as either duplicates or not meeting the inclusion and exclusion criteria. 14 papers were identified, describing 13 separate priority setting projects. Participatory approaches were the dominant method adopted but existing prioritisation frameworks were modified with little explanation regarding the rationale, processes for adaptation and theoretical foundation. Processes were predominately researcher led, although with some patient involvement. Surveys and consensus building methods gathered information while ranking systems and thematic analysis tend to generate finalised priorities. However, limited evidence found about transforming priorities into actual research projects and few described plans for implementation to promote translation into user-informed research. CONCLUSION: Prioritisation projects may benefit from justifying the methodological approaches taken to identify mental health research, stating reasons for adapting frameworks alongside reasons for adopting particular methods, while finalised priorities should be worded in such a way as to facilitate their easy translation into research projects.

Stakeholder identified research priorities for early intervention in psychosis.

BACKGROUND: Public resources to answer pertinent research questions about the impact of illness and treatment on people with mental health problems are limited. To target funds effectively and efficiently and maximize the health benefits to populations, prioritizing research areas is needed. Research agendas are generally driven by researcher and funder priorities, however, there is growing recognition of the need to include user-defined research priorities to make research more relevant, needs-based and efficient. OBJECTIVE: To gain consensus on top priorities for research into early intervention in psychosis through a robust, democratic process for prioritization enlisting the views of key stakeholders including users, carers and healthcare professionals. We also sought to determine which user-prioritized questions were supported by scientific evidence. DESIGN AND METHODS: We used a modified nominal group technique to gain consensus on unanswered questions that were obtained by survey and ranked at successive stages by a steering group comprising users, carer representatives and clinicians from relevant disciplines and stakeholder bodies. We checked each question posed in the survey was unanswered in research by reviewing evidence in five databases (Medline, Cinahl, PsychInfo, EMBASE and Cochrane Database). RESULTS: Two hundred and eighty-three questions were submitted by 207 people. After checking for relevance, reframing and examining for duplicates, 258 questions remained. We gained consensus on 10 priority questions; these largely represented themes around access and engagement, information needs before and after treatment acceptance, and the influence of service-user (SU) priorities and beliefs on treatment choices and effectiveness. A recovery SUtheme identified specific self-management questions and more globally, a need to fully identify factors that impact recovery. DISCUSSION AND CONCLUSIONS: Published research findings indicated that the priorities of service users, carers and healthcare professionals were aligned with researchers' and funders' priorities in some areas and misaligned in others providing vital opportunities to develop research agendas that more closely reflect users' needs. PATIENT AND PUBLIC CONTRIBUTION: Initial results were presented at stakeholder workshops which included service-users, carers, health professionals and researchers during a consensus workshop to prioritize research questions and allow the opportunity for feedback. Patient and public representatives formed part of the steering group and were consulted regularly during the research process.

Exploring the obesity concerns of British Pakistani women living in deprived inner-city areas: A qualitative study.

INTRODUCTION: British South Asians have a higher prevalence of overweight and obesity than the wider population. Bradford (UK), with its high Pakistani presence and levels of economic deprivation, has exceptionally high instances, especially in deprived areas where many Pakistanis reside. British Pakistani women in Bradford are more likely to be overweight and obese. There is uncertainty on how these women can be aided to manage their weight. Therefore, the objective of this study was to explore the obesity concerns of Pakistani women living in deprived inner-city areas of Bradford. METHODS: Three focus groups interviews were carried out with 23 Pakistani women living in deprived areas of Bradford. Data were analysed thematically. RESULTS: This exploratory study identified a wide range of concerns that women had around managing their weight. Participants disclosed distrust in information given around medication, conflicting dietary information and reported low levels of trust in women-only organized physical activities. Cultural barriers were identified, which included the gender role of the woman, the lack of culturally appropriate dietary advice, cultural misunderstandings of what constitutes a healthy diet and healthy weight, the lack of culturally suitable exercise facilities and conforming to family and community expectations. Other concerns were language barriers around a lack of understanding, the inability to read Urdu and reliance on others to translate information. CONCLUSION: These findings have implications for researchers, local authorities, policy makers and others with an interest in reducing the rates of obesity in this population. Recommendations include training health practitioners to be culturally aware of the diet and eating practices of this community, exploring different ways to support socially isolated women to be more physically active at home, addressing physical activity and diet misconceptions and designing obesity management information materials appropriate for a range of literacy levels. PATIENT OR PUBLIC CONTRIBUTION: Public contributors were involved in the development of the interview guide and design of the research. A pilot focus group with participants not included in the present paper was used to help test and refine the focus group questions. Interview transcripts were member checked by participants, and participants assisted with data analysis.

Developing an obesity research agenda with British Pakistani women living in deprived areas with involvement from multisectoral stakeholders: Research priority setting with a seldom heard group.

INTRODUCTION: British Pakistani women have exceptionally high rates of obesity and yet are seldom heard in a research priority setting concerning weight management. The objectives of this study were (i) to ascertain what multisectoral professionals perceive to be the most pressing unmet obesity needs or topic areas that need more research in relation to Pakistani women living in deprived areas of Bradford and (ii) to determine the top 10 obesity health priorities for this group to develop an obesity research agenda. METHODS: A two-step process was adopted using the following: (i) a survey of a wide range of multisectoral professional stakeholders (n = 159) and (ii) a ranking exercise involving Pakistani women living in deprived areas of Bradford (n = 32) to select and prioritize their top 10 obesity health concerns and unmet needs from a list of 31 statements identified in the survey and previous research. Survey data were analysed using inductive content analysis and themes were identified. Themes were translated into statements to be ranked by Pakistani women. The ranking exercise was conducted by telephone either via voice or video call. Data were analysed using a reverse scoring system. RESULTS: Survey responses were grouped into statements reflecting the following three categories: education needs; healthy behaviour barriers and mental well-being. The highest rankings were given by Pakistani women to statements on mental health and the need for education. The top 10 prioritized statements were developed with members of the public into an obesity research agenda that reflected the target population. CONCLUSION: Actively engaging British Pakistani women in setting research priorities provided a unique opportunity to understand the key areas they think are important for future research. The culminating research agenda can be used by researchers to advance the field of obesity research in Pakistani communities, thus producing research outputs that are relevant to and have impact in this population. PATIENT OR PUBLIC CONTRIBUTION: Participants in the ranking exercise collected data. Public contributors were involved in developing the prioritized statements into a research agenda.

Using Social Media to Engage Knowledge Users in Health Research Priority Setting: Scoping Review.

BACKGROUND: The need to include individuals with lived experience (ie, patients, family members, caregivers, researchers, and clinicians) in health research priority setting is becoming increasingly recognized. Social media-based methods represent a means to elicit and prioritize the research interests of such individuals, but there remains sparse methodological guidance on how best to conduct these social media efforts and assess their effectiveness. OBJECTIVE: This review aims to identify social media strategies that enhance participation in priority-setting research, collate metrics assessing the effectiveness of social media campaigns, and summarize the benefits and limitations of social media-based research approaches, as well as recommendations for prospective campaigns. METHODS: We searched PubMed, Embase, Cochrane Library, Scopus, and Web of Science from database inception until September 2021. Two reviewers independently screened all titles and abstracts, as well as full texts for studies that implemented and evaluated social media strategies aimed at engaging knowledge users in research priority setting. We subsequently conducted a thematic analysis to aggregate study data by related codes and themes. RESULTS: A total of 23 papers reporting on 22 unique studies were included. These studies used Facebook, Twitter, Reddit, websites, video-calling platforms, emails, blogs, e-newsletters, and web-based forums to engage with health research stakeholders. Priority-setting engagement strategies included paid platform-based advertisements, email-embedded survey links, and question-and-answer forums. Dissemination techniques for priority-setting surveys included snowball sampling and the circulation of participation opportunities via internal members' and external organizations' social media platforms. Social media campaign effectiveness was directly assessed as number of clicks and impressions on posts, frequency of viewed posts, volume of comments and replies, number of times individuals searched for a campaign page, and number of times a hashtag was used. Campaign effectiveness was indirectly assessed as numbers of priority-setting survey responses and visits to external survey administration sites. Recommendations to enhance engagement included the use of social media group moderators, opportunities for peer-to-peer interaction, and the establishment of a consistent tone and brand. CONCLUSIONS: Social media may increase the speed and reach of priority-setting participation opportunities leading to the development of research agendas informed by patients, family caregivers, clinicians, and researchers. Perceived limitations of the approach include underrepresentation of certain demographic groups and addressing such limitations will enhance the inclusion of diverse research priority opinions in future research agendas.

Knowledge gaps and national research priorities for COVID-19 in Iran.

BACKGROUND: In the present COVID-19 crisis, one of the greatest challenges for research funding at both the international and national level is selecting the best research topic to achieve efficiency and equity in health research and to address the knowledge gap urgently raised due to the event. Despite international recommendations, countries should consider their context-specific situation and define local research priorities. We aimed to exercise a priority-setting activity to identify the knowledge gaps and suggest research priorities in response to the COVID-19 epidemic in Iran. METHODS: First, we tried to identify the contextual knowledge gaps based on an online survey, performing key informant interviews (i.e. health professionals, policy-makers and managers) and media analysis. We also performed a literature review and considered international research priorities for COVID-19. Subsequently, we prepared a list of research questions and challenges to respond to the COVID-19 crisis in Iran using a systems approach. Then we mapped approved COVID-19 research projects in the country to research questions. Finally, we compared the identified research questions (not challenges) with the prioritized research from international organizations and then prioritized them for Iran. RESULTS: We found risk factors and epidemiological dissemination patterns of the virus and its consequences in an epidemiology domain, implementation of clinical and hygiene in a clinical management domain, genetic studies for targeting prevention and treatment in a candidate treatment and vaccine research and development (R&D) knowledge domain, examination of the manifestations of ethics in society instead of ethics in research in an ethics domain, "care, access and health system" and "public health and participation in response to public health and clinical research" as two sub-domains of a social sciences domain, and finally, no new questions in either the virology, transmission, diagnosis or animal and environmental domain. CONCLUSIONS: In the event of global health crises like COVID-19, prioritization of research questions can be done globally, but some of the research priorities are context-specific and may vary by regional needs. To better manage research resources, researchers must respond to the challenges faced in each country based on its political, economic, social and cultural characteristics, and to make evidence-informed decisions, global knowledge gaps must be customized in each country.

Setting the global research agenda for community-based HIV service delivery through the faith sector.

BACKGROUND: While leading AIDS organizations expect faith and health collaborations to play a crucial role in organizing and scaling up community-based HIV services, it is unclear how this can be realized. Little primary research has been conducted into which strategies for collaboration and service provision are most effective, efficient, scalable and sustainable. Seeking to align research with urgent needs, enhance coordination and increase the likelihood that results are used, this study aimed to set an inclusive global research agenda that reflects priority research questions from key stakeholders at the intersection of HIV healthcare and faith. METHODS: In order to develop this global research agenda, we drew from document analyses, focus group discussions, interviews with purposively selected key informants from all continents (policy-makers, healthcare providers, faith leaders, academics and HIV activists), an online questionnaire, and expert meetings at several global conferences. We carried out focus group discussions and interviews with faith leaders in South Africa. Other stakeholder focus groups and interviews were carried out online or in person in France, Switzerland, the Netherlands and South Africa, and virtual questionnaires were distributed to stakeholders worldwide. Respondents were purposively sampled. RESULTS: We interviewed 53 participants, and 110 stakeholders responded to the online questionnaire. The participants worked in 54 countries, with the majority having research experience (84%), experience with policy processes (73%) and/or experience as a healthcare provider (60%) and identifying as religious (79%). From interviews (N = 53) and questionnaires (N = 110), we identified 10 research themes: addressing sexuality, stigma, supporting specific populations, counselling and disclosure, agenda-setting, mobilizing and organizing funding, evaluating faith-health collaborations, advantage of faith initiatives, gender roles, and education. Respondents emphasized the need for more primary research and prioritized two themes: improving the engagement of faith communities in addressing sexuality and tackling stigma. CONCLUSIONS: A wide range of respondents participated in developing the research agenda. To align research to the prioritized themes and ensure that results are used, it is essential to further engage key users, funders, researchers and other stakeholders, strengthen the capacity for locally embedded research and research uptake and contextualize priorities to diverse religious traditions, key populations and local circumstances.

What do end-users want to know about managing the performance of healthcare delivery systems? Co-designing a context-specific and practice-relevant research agenda.

BACKGROUND: Despite increasing interest in joint research priority-setting, few studies engage end-user groups in setting research priorities at the intersection of the healthcare and management disciplines. With health systems increasingly establishing performance management programmes to account for and incentivize performance, it is important to conduct research that is actionable by the end-users involved with or impacted by these programmes. The aim of this study was to co-design a research agenda on healthcare performance management with and for end-users in a specific jurisdictional and policy context. METHODS: We undertook a rapid review of the literature on healthcare performance management (n = 115) and conducted end-user interviews (n = 156) that included a quantitative ranking exercise to prioritize five directions for future research. The quantitative rankings were analysed using four methods: mean, median, frequency ranked first or second, and frequency ranked fifth. The interview transcripts were coded inductively and analysed thematically to identify common patterns across participant responses. RESULTS: Seventy-three individual and group interviews were conducted with 156 end-users representing diverse end-user groups, including administrators, clinicians and patients, among others. End-user groups prioritized different research directions based on their experiences and information needs. Despite this variation, the research direction on motivating performance improvement had the highest overall mean ranking and was most often ranked first or second and least often ranked fifth. The research direction was modified based on end-user feedback to include an explicit behaviour change lens and stronger consideration for the influence of context. CONCLUSIONS: Joint research priority-setting resulted in a practice-driven research agenda capable of generating results to inform policy and management practice in healthcare as well as contribute to the literature. The results suggest that end-users are keen to open the "black box" of performance management to explore more nuanced questions beyond "does performance management work?" End-users want to know how, when and why performance management contributes to behaviour change (or fails to) among front-line care providers.

Using ex-ante economic evaluation to inform research priorities in pesticide self-poisoning prevention: the case of a shop-based gatekeeper training programme in rural Sri Lanka.

OBJECTIVES: Suicide by pesticide self-poisoning is a major public health challenge in low- and middle-income countries. While effectiveness studies are required to test alternative prevention approaches, economic evidence is lacking to inform decision-making in research priority setting. Therefore, this study aimed to estimate the costs of a shop-based gatekeeper training programme for pesticide vendors seeking to prevent pesticide self-poisoning in rural Sri Lanka and assess its potential for cost-effectiveness. METHODS: Ex-ante cost and cost-effectiveness threshold (CET) analyses were performed from a governmental perspective based on a three-year analytic horizon, using 'no programme' as a comparator. A programme model targeting all 535 pesticide shops in the North Central Province and border areas was applied. Total programme costs (TPC) were estimated in 2019 USD using an ingredients approach and 3% annual discounting. The Sri Lankan gross domestic product per capita and life years saved were used as CET and effectiveness measure, respectively. Sensitivity analyses were performed. RESULTS: TPC were estimated at 31 603.03 USD. TPC were sensitive to cost changes of training material and equipment and the programme lifetime. The programme needs to prevent an estimated 0.23 fatal pesticide self-poisoning cases over three years to be considered cost-effective. In the sensitivity analyses, the highest number of fatal cases needed to be prevented to obtain cost-effectiveness was 4.55 over three years. CONCLUSIONS: From an economic perspective, the programme has a very high potential to be cost-effective. Research assessing its effectiveness should therefore be completed, and research analysing its transferability to other settings prioritised.

OBJECTIFS: Le suicide par auto-intoxication par les pesticides est un défi majeur de santé publique dans les pays à revenu faible ou intermédiaire. Bien que des études d'efficacité soient nécessaires pour tester d'autres approches de prévention, les données économiques manquent pour informer la prise de décision dans les priorités de recherche. Par conséquent, cette étude visait à estimer les coûts d'un programme de formation des vendeurs dans les magasins de pesticides visant à prévenir l'auto-intoxication par les pesticides dans les régions rurales du Sri Lanka et à évaluer son potentiel de rentabilité. MÉTHODES: Les analyses ex-ante des coûts et des seuils de rentabilité (SR) ont été réalisées dans une perspective gouvernementale sur la base d'un horizon analytique de trois ans, en utilisant «l'absence de programme¼ comme comparateur. Un modèle de programme ciblant les 535 magasins de pesticides de la province du Centre-Nord et des zones frontalières a été appliqué. Les coûts totaux du programme (CTP) ont été estimés en USD 2019 en utilisant une approche d'ingrédients et une remise annuelle de 3%. Le produit intérieur brut sri-lankais par habitant et les années de vie sauvées ont été utilisés comme SR et mesure d'efficacité, respectivement. Des analyses de sensibilité ont été effectuées. RÉSULTATS: le CTP a été estimé à 31.603,03 USD. Le CTP était sensible aux changements de coût du matériel et de l'équipement de formation et de la durée de vie du programme. Le programme devrait prévenir environ 0,23 cas d'auto-intoxication mortelle par des pesticide sur trois ans pour être considéré comme rentable. Dans les analyses de sensibilité, le plus grand nombre de cas mortels à prévenir pour obtenir une rentabilité était de 4,55 sur trois ans. CONCLUSIONS: D'un point de vue économique, le programme a un potentiel très élevé pour être rentable. La recherche évaluant son efficacité doit donc être complétée et la recherche analysant sa transférabilité à d'autres contextes doit être priorisée.

Research priorities of women at risk for preterm birth: findings and a call to action.

BACKGROUND: Traditional hierarchical approaches to research give privilege to small groups with decision-making power, without direct input from those with lived experience of illness who bear the burden of disease. A Research Justice framework values the expertise of patients and communities as well as their power in creating knowledge and in decisions about what research is conducted. Preterm birth has persisted at epidemic levels in the United States for decades and disproportionately affects women of color, especially Black women. Women of color have not been included in setting the agenda regarding preterm birth research. METHODS: We used the Research Priorities of Affected Communities protocol to elicit and prioritize potential research questions and topics directly from women of color living in three communities that experience disproportionately high rates of preterm birth. Women participated in two focus group sessions, first describing their healthcare experiences and generating lists of uncertainties about their health and/or healthcare during pregnancy. Women then participated in consensus activities to achieve 'top-priority' research questions and topic lists. The priority research questions and topics produced by each group were examined within and across the three regions for similarities and differences. RESULTS: Fifty-four women participated in seven groups (14 sessions) and generated 375 researchable questions, clustered within 22 topics and four overarching themes: Maternal Health and Care Before, During, and After Pregnancy; Newborn Health and Care of the Preterm Baby; Understanding Stress and Interventions to Prevent or Reduce Stress; and Interpersonal and Structural Health Inequities. The questions and topics represent a wide range of research domains, from basic science, translational, clinical, health and social care delivery to policy and economic research. There were many similarities and some unique differences in the questions, topics and priorities across the regions. CONCLUSIONS: These findings can be used to design and fund research addressing unanswered questions that matter most to women at high risk for preterm birth. Investigators and funders are strongly encouraged to incorporate women at the front lines of the preterm birth epidemic in research design and funding decisions, and more broadly, to advance methods to deepen healthcare research partnerships with affected communities.

Evaluation of the Cochrane Consumers and Communication Group's systematic review priority-setting project.

BACKGROUND: Health researchers and funders are increasingly consulting with stakeholders to set their research agendas but these activities are rarely evaluated. The Cochrane Consumers and Communication Group (CCCG) conducted a priority-setting project for systematic reviews in partnership with stakeholders (consumers/patients, health professionals, policy-makers and others). In this paper, we aim to describe our evaluation of the project's processes and outcomes. METHODS: We used a 10-element conceptual framework designed to evaluate processes (e.g. stakeholder engagement, use of explicit process) and outcomes (e.g. improved decision-making quality, stakeholder acceptance and understanding) of health priority-setting. Data sources included empirical data (feedback surveys, project documents and CCCG editorial policies) and CCCG staff reflections. Data were analysed using content analysis. RESULTS: The project met three and partially met two of the process elements, for example, by engaging key stakeholders throughout the project and using pre-determined and transparent methods that offered multiple and meaningful ways to contribute. The project met three and partially met two of the outcome elements. Stakeholders were satisfied with and accepted the process and an additional six Cochrane Review titles aligned with stakeholder priorities are now being conducted in partnership with stakeholders. The project has also directly influenced the editorial work of CCCG, for example, by shifting its organisational focus towards coproduction, and indirectly influenced the work of Cochrane's prioritisation and coproduction activities. Some areas were identified as having room for improvement, for example, there was low participation by people from diverse backgrounds, stakeholders could contribute to most but not all project stages, and there was no formal way for stakeholders to appeal decisions at project end. In the 3 years since its completion, the Cochrane Reviews are nearing completion but none of the reviews have been published. CONCLUSION: We demonstrated that our priority-setting methods were broadly in line with best practice and the project resulted in many positive outcomes beyond just identifying the top priorities for research. Our evaluation framework and recommendations for future evaluations may be of use to priority-setting researchers planning similar activities.

An analysis of the strategic plan development processes of major public organisations funding health research in nine high-income countries worldwide.

BACKGROUND: There have been claims that health research is not satisfactorily addressing healthcare challenges. A specific area of concern is the adequacy of the mechanisms used to plan investments in health research. However, the way organisations within countries devise research agendas has not been systematically reviewed. This study seeks to understand the legal basis, the actors and the processes involved in setting research agendas in major public health research funding organisations. METHODS: We reviewed information relating to the formulation of strategic plans by 11 public funders in nine high-income countries worldwide. Information was collected from official websites and strategic plan documents in English, French, Italian and Spanish between January 2019 and December 2019, by means of a conceptual framework and information abstraction form. RESULTS: We found that the formulation of a strategic plan is a common and well-established practice in shaping research agendas across international settings. Most of the organisations studied are legally required to present a multi-year strategic plan. In some cases, legal provisions may set rules for actors and processes and may establish areas of research and/or types of research to be funded. Commonly, the decision-making process involves both internal and external stakeholders, with the latter being generally government officials and experts, and few examples of the participation of civil society. The process also varies across organisations depending on whether there is a formal requirement to align to strategic priorities developed by an overarching entity at national level. We also found that, while actors and their interactions were traceable, information, sources of information, criteria and the mechanisms/tools used to shape decisions were made less explicit. CONCLUSIONS: A complex picture emerges in which multiple interactive entities appear to shape research plans. Given the complexity of the influences of different parties and factors, the governance of the health research sector would benefit from a traceable and standardised knowledge-based process of health research strategic planning. This would provide an opportunity to demonstrate responsible budget stewardship and, more importantly, to make efforts to remain responsive to healthcare challenges, research gaps and opportunities.

Global research priorities for social, behavioural and community engagement interventions for maternal, newborn and child health.

BACKGROUND: Social, behavioural and community engagement (SBCE) interventions are essential for global maternal, newborn and child health (MNCH) strategies. Past efforts to synthesise research on SBCE interventions identified a need for clear priorities to guide future research. WHO led an exercise to identify global research priorities for SBCE interventions to improve MNCH. METHODS: We adapted the Child Health and Nutrition Research Initiative method and combined quantitative and qualitative methods to determine MNCH SBCE intervention research priorities applicable across different contexts. Using online surveys and meetings, researchers and programme experts proposed up to three research priorities and scored the compiled priorities against four criteria - health and social impact, equity, feasibility, and overall importance. Priorities were then ranked by score. A group of 29 experts finalised the top 10 research priorities for each of maternal, newborn or child health and a cross-cutting area. RESULTS: A total of 310 experts proposed 867 research priorities, which were consolidated into 444 priorities and scored by 280 experts. Top maternal and newborn health priorities focused on research to improve the delivery of SBCE interventions that strengthen self-care/family care practices and care-seeking behaviour. Child health priorities focused on the delivery of SBCE interventions, emphasising determinants of service utilisation and breastfeeding and nutrition practices. Cross-cutting MNCH priorities highlighted the need for better integration of SBCE into facility-based and community-based health services. CONCLUSIONS: Achieving global targets for MNCH requires increased investment in SBCE interventions that build capacities of individuals, families and communities as agents of their own health. Findings from this exercise provide guidance to prioritise investments and ensure that they are best directed to achieve global objectives. Stakeholders are encouraged to use these priorities to guide future research investments and to adapt them for country programmes by engaging with national level stakeholders.

Research funding impact and priority setting - advancing universal access and quality healthcare research in Malaysia.

BACKGROUND: Health 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. METHODS: Research 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. RESULTS: Seventeen 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. CONCLUSION: The 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.