Exploring Health Research Priority Setting in a South African Province: A Nominal Group Technique Approach.

In August 2022, the Free State Provincial Health Research Committee used the online nominal group technique (NGT) for Health Research Priority Setting (HRPS) for the Free State Department of Health (FSDoH) and the research community, considering various stakeholders' perspectives. This paper explores and describes the identified health research priorities. It also assesses their alignment with the National Health Research Strategy. Additionally, it provides an opinion on the feasibility of using the online NGT for collaborative co-creation of provincial-level health research priorities. Most of the identified health research priorities resonate with the national health research priorities identified by the National Health Research Committee. However, research to "strengthen surveillance" was uniquely perceived to be a priority by the participants in the Free State HRPS exercise. A plausible reason for this might be their heightened awareness of the vital role optimal surveillance systems play in coordinating intersectoral responses to pandemics, particularly considering the serious challenges emerging during the initial stages of the COVID-19 outbreak.

Ethics and health research priority setting: a narrative review.

This narrative review aims to describe current practice and ongoing discussions in the academic literature regarding ethics and health research priority setting. It begins with some preliminary distinctions regarding types of research priority setting. It then gives some background on current practice with respect to formal research priority setting exercises, including summaries of The Ad Hoc Committee on Health Research method, the Child Health and Nutrition Research Initiative (CHNRI) method, the Combined Approach Matrix (CAM), the Delphi method, the Essential National Health Research (ENHR) strategy for priority setting, and the James Lind Alliance (JLA) framework. The majority of the paper reports the results of a literature review covering specifically ethical issues under the thematic headings of process criteria, substantive criteria, global justice, the obligations of specific actors, and research topics. It closes with some summary thoughts about apparent gaps and directions for future investigation.

More health research is needed to develop new treatment and prevention options for many diseases. But there are limited resources available to support health research. This means that difficult decisions must be made about how to allocate those resources among competing important projects. Making these decisions is called priority setting. Dr. Joseph Millum reviewed what has been published on the ethics of health research priority setting. First, he compared different methods that have already been developed to help organizations and governments set priorities. Second, he identified themes in the current discussions about ethics and priority setting. Some important themes included: how stakeholders should be included in priority setting exercises; what would be a fair allocation of research resources; global disparities in health research; and how different types of funder should think about their obligations. The results of this review will inform guidance from the World Health Organization on how to incorporate ethics into health research priority setting.

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.

What matters to you? Engaging with children in the James Lind Alliance Children's Cancer Priority Setting Partnership.

BACKGROUND: Previous priority setting exercises have sought to involve children, but in the final reporting, it is evident that few children had been engaged through the process. A primary aim in the Children's Cancer Priority Setting Partnership was to find out from children what they want research to focus on. We report on our experience to inform methods of engagement with children in future James Lind Alliance Priority Setting Partnerships and similar exercises. METHODS: We followed the James Lind Alliance process, collecting and shortlisting questions via online surveys with adult survivors of childhood cancer, carers, and professionals, and holding a final workshop. Alongside this, a parallel process to collect and prioritise questions from children was undertaken. We created animations for parents/carers to explain the project and surveys to children, gathered questions via online surveys and held a workshop with children to identify their priorities. RESULTS: Sixty-one children and young people with cancer and 10 siblings, aged 3-21 years, submitted 252 potential questions/topics via the surveys. Submissions were refined into 24 summary questions. These questions were discussed at a workshop with eight children; they also added more questions on topics of importance to them. Workshop participants prioritised the Top 5 questions; top priority was, 'How can we make being in hospital a better experience for children and young people? (like having better food, internet, toys, and open visiting so other family members can be more involved in the child's care)'. The Top 5 also included cancer prevention, treatments closer to home, early diagnosis, and emotional support. These questions were taken to the final workshop at which the Top 10 priorities were decided, all five children's priorities were reflected in the final Top 10. CONCLUSIONS: We have demonstrated that it is possible to successfully involve children directly in setting priorities for future research. Future priority setting exercises on topics relevant to children, should seek to include their views. The Children's Cancer Top 10 priorities reflect the voices of children and should inform the funding of future research.

Priority Setting Partnerships find out what areas of research are important to patients, families, and the professionals who care for them. Few Priority Setting Partnerships have involved children, so what matters to them may not have been well-represented. The Children's Cancer Priority Setting Partnership aimed to find out directly from children what research we should do. We collected questions/topics for research from children using online surveys. We made animations to explain the project and surveys to children. Two-hundred and fifty-two questions were sent in by 61 children and young people with cancer and 10 siblings. We grouped similar questions together into 24 summary questions. Summary questions were discussed at a workshop with eight children. Workshop participants added more questions on topics that mattered to them, and decided their Top 5 questions. The top question was, 'How can we make being in hospital a better experience for children and young people? (like having better food, internet, toys, and open visiting so other family members can be more involved in the child's care)'. The Top 5 questions included: preventing cancer, having treatments nearer home, early diagnosis, and emotional support. These questions were taken to the final project workshop, this was with adults, including childhood cancer survivors, where the Top 10 priorities were decided. All five children's priorities were included in the Top 10. We have shown it is possible to successfully involve children in setting research priorities. Future priority setting exercises on topics that affect children should actively seek and include their views.

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.

Co-producing principles to guide health research: an illustrative case study from an eating disorder research clinic.

BACKGROUND: There is significant value in co-produced health research, however power-imbalances within research teams can pose a barrier to people with lived experience of an illness determining the direction of research in that area. This is especially true in eating disorder research, where the inclusion of co-production approaches lags other research areas. Appealing to principles or values can serve to ground collaborative working. Despite this, there has not been any prior attempt to co-produce principles to guide the work of a research group and serve as a basis for developing future projects. METHODS: The aim of this piece of work was to co-produce a set of principles to guide the conduct of research within our lived experience led research clinic, and to offer an illustrative case for the value of this as a novel co-production methodology. A lived experience panel were recruited to our eating disorder research group. Through an iterative series of workshops with the members of our research clinic (composed of a lived experience panel, clinicians, and researchers) we developed a set of principles which we agreed were important in ensuring both the direction of our research, and the way in which we wanted to work together. RESULTS: Six key principles were developed using this process. They were that research should aim to be: 1) real world-offering a clear and concrete benefit to people with eating disorders, 2) tailored-suitable for marginalised groups and people with atypical diagnoses, 3) hopeful-ensuring that hope for recovery was centred in treatment, 4) experiential-privileging the 'voice' of people with eating disorders, 5) broad-encompassing non-standard therapeutic treatments and 6) democratic-co-produced by people with lived experience of eating disorders. CONCLUSIONS: We reflect on some of the positives as well as limitations of the process, highlighting the importance of adequate funding for longer-term co-production approaches to be taken, and issues around ensuring representation of minority groups. We hope that other health research groups will see the value in co-producing principles to guide research in their own fields, and will adapt, develop, and refine this novel methodology.

It important that when researchers are trying to understand illnesses they do this together with people who have experienced them. This can be difficult, because researchers often take over­even if everyone is meant to be working as a team. We are a group of people trying to understand eating disorders and help people who have them get better. In our group there are some people that have experienced an eating disorder, health workers and researchers.We thought it might be helpful if we could start by working out what things were most important to us as a group, and then try to stick by them. We talked a lot together to come up with a list of principles.The six principles we thought were the most important were that research should make a difference to people's lives, see people as individuals, be hopeful, make sure that people have a voice, look at things that aren't traditional therapies, and always work together as equals.There are some issues with what we did; we found it hard to get a good mix of people in our group, and we were lucky in having enough money to pay people to do what we wanted to do, which is not always true. Despite this, we still hope that other teams might look at what we have done, and see if they could build on it, or change it, so it would work for them.

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.

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.

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.

Patient priority setting in HIV ageing research: exploring the feasibility of community engagement and involvement in Tanzania.

OBJECTIVE: The chronic complications of ageing with HIV are not well studied in sub-Saharan Africa (SSA) where general healthcare resources are limited. We aimed to collaborate with individuals living with HIV aged ≥ 50 years, and community elders (aged ≥ 60 years) living with non-communicable diseases in the Kilimanjaro region of Tanzania in a health research priority-setting exercise. METHODS: We conducted structured workshops based on broad questions to aid discussion and group-based patient priority setting, alongside discussion of the feasibility of future community research engagement. Participant priorities were tallied and ranked to arrive at core priorities from consensus discussion. RESULTS: Thirty older people living with HIV and 30 community elders attended separate priority setting workshops. Both groups reported motivation to participate in, conduct, and oversee future studies. In this resource-limited setting, basic needs such as healthcare access were prioritised much higher than specific HIV-complications or chronic disease. Stigma and social isolation were highly prioritised in those living with HIV. CONCLUSIONS: Community engagement and involvement in HIV and ageing research appears feasible in Tanzania. Ageing and non-communicable disease research should consider the wider context, and lack of basic needs in low-income settings. A greater impact may be achieved with community involvement.

The population in sub-Saharan Africa is ageing. The majority of people living with HIV infection also live in Africa, and they are ageing now that treatment is widely available. Current research on the chronic complications of ageing with and without HIV in sub-Saharan Africa is very limited, meaning that little is known on how to improve symptoms. In this pilot study, researchers from Tanzania and the UK worked with older people living with HIV, and community elders in Tanzania in a health research priority-setting exercise. Thirty older people living with HIV and thirty community elders attended workshops where they listed issues important to them, and then voted for each item as a group. Priorities were ranked in order of importance by adding up the number of votes. We also asked how interested and motivated older people were to work jointly with academic researchers and what might help and support them to do this. Both groups reported that they felt very motivated to participate in, conduct and oversee future research studies. A key finding was that basic needs, such as being able to see a doctor regularly and buying medications, were prioritised much higher than specific HIV-complications or chronic disease. Stigma and social isolation were important issues for older people with HIV. Our pilot findings suggest that meeting basic needs should be a key part of future work on living and ageing with chronic disease in Tanzania. The importance of working with patients and communities is also highlighted.

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.

Trauma Registry Data as a Policy-Making Tool: A Systematic Review on the Research Dimensions.

Objective: To review the research dimensions of trauma registry data on health policy making. Methods: PubMed and EMBASE were searched until July 2020. Keywords were used on the search process included Trauma, Injury, Registry and Research, which were searched by using appropriate search strategies. The included articles had to: 1. be extracted from data related to trauma registries; 2- be written in English; 3- define a time period and a patient population; 4- preferably have more details and policy recommendations; and 5- preferably have a discussion on how to improve diagnosis and treatment. The results obtained from the included studies were qualitatively analyzed using thematic synthesis and comparative tables. Results: In the primary round of search, 19559 studies were retrieved. According to PRISMA statement and also performing quality appraisal process, 30 studies were included in the final phase of analysis. In the final papers' synthesis, 14 main research domains were extracted and classified in terms of the policy implication and research priority. The domains with the highest frequency were "The relationship between trauma registry data and hospital care protocols for trauma patients" and "The causes of Disability Adjusted Life Years (DALYs) due to trauma". Conclusion: Using trauma registry data as a tool for policy-making could be helpful in several ways, namely increasing the quality of patient care, preventing injuries and decreasing their number, figuring out the details of socioeconomic status effects, and improving the quality of researches in practical ways. Also, follow-up of patients after trauma surgery as one of the positive effects of the trauma registry can be the focus of attention of policy-making bodies.

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.

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.

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.

What do we know about evidence-informed priority setting processes to set population-level health-research agendas: an overview of reviews.

BACKGROUND: This overview aimed to synthesize existing systematic reviews to produce a draft framework of evidence-informed health priority setting that supports countries in identifying appropriate steps and methods when developing and implementing national research agendas. MAIN BODY: We searched Ovid MEDLINE® and the WHO Institutional Repository for Information Sharing from 2010 to 2020 for critical or systematic reviews that evaluated research priority setting exercises. We adapted the AMSTAR checklist to assess the quality of included reviews and used adapted frameworks for data extraction and analysis. The search resulted in 2395 titles, of which 31 were included. Populations included in the reviews typically involved patients, families and carers, researchers, clinicians, policymakers and research funders. The topics covered in the reviews varied from specific diseases or conditions, approaches for healthcare practice or research priority setting methods itself. All the included systematic reviews were of low or critically low quality. The studies were thematically grouped based on their main focus: identifying and engaging with stakeholders; methods; context; and health area. CONCLUSION: Our overview of reviews has reconfirmed aspects of existing frameworks, but has also identified new concepts for countries to consider while developing their national research agendas. We propose a preliminary framework for consideration that highlights four key phases: (1) preparatory, (2) priority setting, (3) follow-up phase and (4) sustainability phase, which have thirteen sub-domains to consider.

Research priority setting in obesity: a systematic review.

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

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.

Are we asking the right questions? Working with the LGBTQ+ community to prioritise healthcare research themes.

BACKGROUND: Conversations about research priorities with members of the public are rarely designed specifically to include people who identify as Lesbian, Gay, Bisexual, Transgender and Queer (LGBTQ+) and are not researchers. METHODS: Generally, to address this gap, and specifically, to inform future research for CLS, we carried out a rapid review of published research priority sets covering LGBTQ+ topics, and an online workshop to prioritise identified themes. RESULTS: Rapid review: results. The rapid review identified 18 LGBTQ+ research priority sets. Some focussed on specific populations such as women or men, younger or older people or people living within families. Five addressed transgender and gender non- conforming populations. All of the research priority sets originated from English-speaking, high and middle-income countries (UK, US, Canada, and Australia), and date from 2016 onwards. Prioritization approaches were wide-ranging from personal commentary to expert workshops and surveys. Participants involved in setting priorities mostly included research academics, health practitioners and advocacy organisations, two studies involved LGBTQ+ public in their process. Research priorities identified in this review were then grouped into themes which were prioritised during the workshop. Workshop: results. For the workshop, participants were recruited using local (Cambridge, UK) LGBTQ+ networks and a national advert to a public involvement in research matching website to take part in an online discussion workshop. Those that took part were offered payment for their time in preparing for the workshop and taking part. Participants personal priorities and experiences contributed to a consensus development process and a final ranked list of seven research themes and participants' experiences of healthcare, mental health advocacy, care homes, caring responsibilities, schools and family units added additional context. CONCLUSIONS: From the workshop the three research themes prioritised were: healthcare services delivery, prevention, and particular challenges / intersectionality of multiple challenges for people identifying as LGBTQ+. Research themes interconnected in many ways and this was demonstrated by the comments from workshop participants. This paper offers insights into why these priorities were important from participants' perspectives and detail about how to run an inclusive and respectful public involvement research exercise. On a practical level these themes will directly inform future research direction for CLS.

Conversations about research priorities with members of the public who identify as Lesbian, Gay, Bisexual, Transgender and Queer (LGBTQ+) and are not researchers are not common.We reviewed published research priorities covering LGBTQ+ topics and held an online workshop. The review identified 18 LGBTQ+ research published priority sets. Some focussed on specific populations such as women or men, younger or older people or people living within families. Five were on transgender and gender non- conforming populations. Priorities were achieved by different methods such as workshops and surveys. People involved in setting priorities mostly included researchers, health practitioners and advocacy organisations, two studies involved LGBTQ+ public in their process. Research priorities identified in the review were grouped into themes which were prioritised during the workshop.For the online workshop, participants were recruited using local (Cambridge, UK) LGBTQ+ networks and a national advert and offered payment for their time. Participants personal priorities and experiences contributed to agreeing a final list of seven research themes in priority order. Participants' experiences of healthcare, mental health advocacy, care homes, caring responsibilities, schools and family units were helpful.From the workshop the three top research themes were: healthcare services delivery, prevention, and particular and multiple challenges of people identifying as lesbian, gay, bisexual, transgender or queer. Research themes interconnected in many ways as shown by the comments from workshop participants. This paper describes why these priorities were important from participants' perspective and offers information about how to run an inclusive and respectful public involvement research exercise.

Partnering with survivors & families to determine research priorities for adult out-of-hospital cardiac arrest: A James Lind Alliance Priority Setting Partnership.

BACKGROUND: Research priority setting in health care has historically been done by expert health care providers and researchers and has not involved patients, family or the public. Survivors & family members have been particularly absent from this process in the field of resuscitation research and specifically adult out of hospital cardiac arrest (OHCA). As such, we sought to conduct a priority setting exercise in partnership with survivors, lay responders and their families in order to ensure that their priorities were visible. We partnered with the James Lind Alliance (UK) and used their commonly used consensus methodology for Public Priority Setting Partnerships (PSPs) to identify research priorities that reflected the perspectives of all stakeholders. METHODS: We used two rounds of public and health care professional surveys to create the initial priority lists. The initial survey collected open-ended questions while the second round consolidated the list of initial questions into a refined list for prioritization. This was done by reviewing existing evidence and thematic categorization by the multi-disciplinary steering committee. An in-person consensus workshop was conducted to come to consensus on the top ten priorities from all perspectives. The McMaster PPEET tool was used to measure engagement. RESULTS: The initial survey yielded more than 425 responses and 1450 "questions" from survivors and family members (18%), lay responders, health care providers and others. The second survey asked participants to rank a short list of 125 questions. The final top 25 questions were brought to the in-person meeting, and a top ten were selected through the JLA consensus process. The final list of top ten questions included how to improve the rate of lay responder CPR, what interventions used at the scene of an arrest can improve resuscitation and survival, how survival can be improved in rural areas of Canada, what resuscitation medications are most effective, what care patient's family members need, what post-discharge support is needed for survivors, how communication should work for everyone involved with a cardiac arrest, what factors best predict neurologically intact survival, whether biomarkers/genetic tests are effective in predicting OHCA and more research on the short and long-term psycho-social impacts of OHCA on survivors. The PPEET showed overwhelmingly positive results for the patient and family engagement experience during the final workshop. CONCLUSIONS: This inclusive research priority setting provides essential information for those doing resuscitation research internationally. The results provide a guide for priority areas of research and should drive our community to focus on questions that matter to survivors and their families in our work. In particular the Canadian Resuscitation Outcomes Consortium will be incorporating the top ten list into its strategic plan for the future.