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The application of both Indigenous and Western knowledge systems in research may provide a well-rounded understanding of health, illness, and wellbeing for Indigenous communities in colonised societies. While many researchers have used a dual approach to researching Indigenous communities in colonised societies, tensions continue to exist around the use of Indigenous and Western ways of knowing together. There are also ongoing tensions between Indigenous methodologies and ethics processes rooted in Western understandings of research. Kaupapa Māori research is an Indigenous Māori approach to research that is about being Māori, is connected to Māori philosophy, culture and knowledge, and centres priorities for Māori. Grounded theory is a Western scientific approach to produce a theory grounded in qualitative data. This paper presents a novice researcher's reflections on using kaupapa Māori research and grounded theory to explore the relational aspects of acute health care in Aotearoa, New Zealand. The research design attempts to utilise the ethics of kaupapa Māori research and the essential methods of grounded theory to develop a research approach that is robust and culturally appropriate. Conforming to conventional Western science-based research methods while endeavouring to privilege Indigenous realities is challenging and, at times, impossible. However, grounded theory can be flexible enough to adapt to the ethics of kaupapa Māori research. Research at the interface between Indigenous and Western knowledge systems presents opportunities for innovation in research design and can provide an ethical foundation for conducting research with Indigenous communities. [ABSTRACT FROM AUTHOR]

Sharing large digital-first datasets, including for purposes for which they were not originally intended, is a hallmark of the “big data revolution”. Through their routine operations, private commercial companies collect massive amounts of diverse data from their customers, some of which may interest those working in the public sector, such as health researchers. Researchers and government agencies worldwide have been increasingly using data from commercial entities (such as Google, Microsoft, Apple, Facebook/Meta, Twitter/X and Amazon, among others) to generate health-related insights. This article explores ethical issues raised by the practice of commercial companies sharing consumer data with third parties for the purposes of promoting health in the sub-Saharan African (SSA) context. First, as an illustrative example, it examines some of the ways telecommunication (telecom) companies in SSA shared mobility data from cellphone users with public health researchers during the COVID-19 pandemic. Second, it examines a recent debate about the ethical responsibilities of companies that collect, process and share user-generated data, drawing implications for the SSA context. Finally, since this is a relatively understudied subject, we point out some areas where future conceptual and empirical work could contribute to the development of relevant ethics guidance and regulatory governance in SSA. [ABSTRACT FROM AUTHOR]

Seven of the top ten leading causes of death in the United States are due to chronic diseases and treating these accounts for 86 percent of our nation's health care costs. The workplace offers an environment to implement chronic disease prevention strategies, such as worksite wellness programs, due to the large amount of time spent at the worksite daily by employees. As a result of COVID-19, many organizations began to change their workdays (i.e., working from home). This research sought to understand what, if any, implications the COVID-19 epidemic had on worksite wellness programming. Semistructured interviews were employed and recorded via Zoom conferencing to gather qualitative data. Four themes were identified: (a) relationship building among remote employees, (b) creativity in how to carry out program components, (c) increased physical activity and work-life balance, and (d) increased knowledge of health issues and mental health resources. Both challenges and successes were reported within themes. The main finding from this research indicates a mostly positive experience for worksite wellness programs during the COVID-19 epidemic. Many organizations have continued nontraditional work environments and the lessons learned from this study can both encourage and provide ideas for how to create and continue a worksite wellness program outside of the normal face-to-face working environment. [ABSTRACT FROM AUTHOR]

All qualitative researchers are familiar with the idea of saturation: that researchers should continue to collect and/or analyze data until nothing new is being added to their arguments or conclusions. Saturation is, however, used and understood in a variety of ways, often appearing as an unevidenced and dogmatic statement seeking to justify that a piece of research is complete. This article explores the application of the idea of saturation in qualitative research, noting its association with grounded theory and the particular interest taken in it by health researchers. It concludes that it is both a misunderstood and an overworked concept. [ABSTRACT FROM AUTHOR]

Adolescent participation in health research studies is critical yet complex given the lack of clarity around issues such as consent. This study aimed to understand how those conducting research in Australia navigate research ethics in health research involving adolescents, through qualitative interviews. Purposive sampling was used to recruit 23 researchers involved in adolescent health research using semi-structured in-depth interviews. Interviews were conducted via Zoom and audio-recorded after obtaining informed consent. Thematic analysis was used to construct themes and data were organised using NVivo. Two contrasting positions emerged from the data: (1) framing of adolescents as inherently vulnerable, their participation in research understood in terms of risk and protection and (2) adolescent engagement in research is understood in terms of empowerment, emphasising their capacity to make decisions about research participation. We traced these positions through three key themes, particularly in relation to the role of ethics committees: (1) competing positions as a result of inferior or superior knowledge about adolescent lives, (2) competing positions resulting in a risk averse or an empowerment approach, and (3) reflections on processes of obtaining consent which involves gatekeeping and tokenism. Our study highlights the contentious topic of navigating ethics committee requirements for the needs of adolescents. Majority of participants felt the current research ethics establishment is not favourable for researchers or adolescents themselves. While it is imperative that perceptions of ethics committees also be studied in the future, our study provides preliminary understanding of how experiences and perceptions shape how researchers interact with the research ethics establishment. [ABSTRACT FROM AUTHOR]

Qualitative Longitudinal Research (QLR) is a dynamic and evolving methodology using time as a lens to inform study design, data collection and analysis. A key feature of QLR is the collection of data on more than one occasion, often described as waves or time points. Thus, researchers embarking on designing a new study need to consider several key features including the study duration (timeframe) and the frequency and intensity of data collection (tempo). Yet, how to embed these features in practice is not well described. Leveraging the intensive-extensive temporal plane of time, we explore research approaches employing both shorter and longer timeframes, as well as intensive and extensive tempos. Drawing on six studies that we have conducted, we discuss four pivotal aspects including: (i) crafting intensive-extensive tempo and timeframes; (ii) defining baseline and closure points; (iii) planning for flexibility; and (iv) working ethically within a temporal lens. By examining and critically analysing these case studies through the lens of the intensive-extensive plane of time, this article aspires to offer insights for researchers interested in using the QLR design in healthcare. We thus aim to prepare researchers for embedding these features during the research process. [ABSTRACT FROM AUTHOR]

German philosopher Hans-Georg Gadamer is best known for his contribution to the development of philosophical hermeneutics, an interpretive approach to knowledge, understanding and meaning-making. It has become a well-established research approach in the health sciences to shed light on the lived experiences of people living with challenging chronic health conditions. Some feminist scholars have gravitated to Gadamer's hermeneutics for its steadfast rejection of positivism and its intention to uncover preunderstandings and prejudices. However, others have critiqued the approach for its lack of focus on prescribing action for social change and its reluctance to evaluate the prejudices present in its own tradition. In this paper, the authors will demonstrate how using feminist hermeneutics can help health researchers deepen their understanding of illness narratives by examining the power structures contributing to the marginalization of chronically ill people within and outside the healthcare system. They will juxtapose a reflexive investigation of the first author's experiences with a focused literature review of the dialogue between hermeneutics and feminism. By examining the first author's experiences with Gadamerian hermeneutics and feminist hermeneutics through self-study, she can in turn unearth her own preunderstandings. This approach will allow the authors to leverage the depth of interpretive understanding generated by hermeneutics while exploring the power structures involved in the complex process that is patient care, particularly that of people with chronic illness. They conclude that this combined approach of feminist hermeneutics allows health researchers to deepen their understanding of illness narratives with issue-specific and effective recommendations to clinicians and public health officials, leading to better-adapted services through a more just approach to chronically ill people. [ABSTRACT FROM AUTHOR]

Concerns about research’s environmental impacts have been articulated in the research arena, but questions remain about what types of role responsibilities are appropriate to place on researchers, if any. The research question of this paper is: what are the views of UK health researchers who use data-intensive methods on their responsibilities to consider the environmental impacts of their research? Twenty-six interviews were conducted with UK health researchers using data-intensive methods. Participants expressed a desire to take responsibility for the environmental impacts of their research, however, they were unable to consolidate this because there were often obstacles that prevented them from taking such role responsibilities. They suggested strategies to address this, predominantly related to the need for regulation to monitor their own behaviour. This paper discusses the implications of adopting such a regulatory approach as a mechanism to promote researchers’ role responsibilities using a neo-liberal critique. [ABSTRACT FROM AUTHOR]

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This abstract supplement includes findings presented through oral or poster presentations at the 50th annual Scientific Day event held on May 22, 2024. Scientific Day provides both an in-person and virtual forum for sharing of research, quality improvement, and case studies conducted by faculty, fellows, residents, and other health professionals associated with Illinois-based Advocate Health Care and Wisconsin-based Aurora Health Care.

Objective: To explore healthcare professionals' attitudes toward research, identify key barriers they face, and uncover potential solutions for overcoming these obstacles, as proposed by the professionals themselves. Study Design: Exploratory Sequential Design Mixed method study. Place and Duration of Study: It was conducted from 15th April 2022 to 15th Oct 2022 among health professionals working in tertiary care hospitals of Rawalpindi and Islamabad. Materials and Methods: A total of 276 junior to mid-level health professionals were included through nonprobability consecutive sampling. The quantitative part was done using a structured close ended questionnaire regarding research barriers. The SPSS version 24.0 was utilized for statistical analysis of quantitative data. Results: In this study a total of 276 health care professionals were included. Male and female doctors were 144 (52.2%) & 132 (47.8%)respectively. Regarding attitude of research 121 (43.8 %) participants believed that research promotes critical thinking and 116 (42.0%) considered it most helpful to improve patients' care. 133 (48.2%) participants attended research training of minimum 8 hours. The common barriers to research as identified by health professionals are absence of support especially technical guidance, less time allotted for research, less funding opportunities, no proper mentoring or supervision, lack of knowledge and skills about research. Conclusion: Health professionals face several research barriers, including a lack of technical support, time, funding, mentorship, and research skills. The absence of a research culture and logistical support further complicates the situation, leaving them overwhelmed and without time for research. Addressing these challenges is essential for enabling impactful research.

Abstract Background Consumer involvement in health research is when patients, their families and caregivers work with researchers on research projects. Despite the growing expectation for health services to facilitate the involvement of consumers in research, the practical integration of this approach is an ongoing process, with limited research conducted into how Australian health services can support this practice. This study explored consumer perspectives on the barriers and solutions to enabling consumer involvement in research within an Australian tertiary hospital and health service, and staff perspectives on the solutions to facilitating consumer involvement. A prior survey had identified barriers to consumer involvement from the staff perspective. The broad aim was to inform the development of a framework to help promote consumer involvement in research within the health service. Methods A Nominal Group Technique (NGT) was utilised with groups comprised of health service consumers and staff. Three health consumers were co-researchers in the full life-cycle of this study and are included as authors. Results Ten consumers and 14 staff participated across three sessions ranging from one to three hours. For consumers, barriers to their involvement were grouped into seven domains: (1) lack of connection with researchers/research projects, (2) low research literacy, (3) structural barriers, (4) lack of acknowledgement, (5) implementation challenges, (6) inadequate information provision, and (7) representation concerns. Solutions to enabling involvement were grouped into five domains: (1) support to connect with researchers/research projects, (2) adequate information provision, (3) incentive for involvement, (4) acknowledgement, and (5) balanced representation. Staff ideas for solutions were grouped into five domains: (1) support to connect with consumers, (2) support to involve consumers, (3) access to funds to remunerate consumers, (4) more time to involve consumers, and (5) staff training. Conclusion Through an NGT methodology, this study delivered a nuanced comprehension of perspectives on involving consumers in research from both health service consumers and staff. These findings serve as a foundation for identifying strategies that foster enhanced and refined relationships between consumers and researchers, advancing the collaborative landscape in health research. The findings from this project offer valuable strategies for researchers to better engage consumers in research and for consumer groups to enhance their involvement. Additionally, these insights could be used by other health services to advocate for essential resources.

Abstract Healthcare professionals have first-hand experience with patients in clinical practice and the dynamics in the healthcare system, which can be of great value in the design, implementation, data analysis and dissemination of research study results. Primary care professionals are particularly important as they provide first contact, accessible, coordinated, comprehensive and continuous people-focused care. However, in-depth examination of the engagement of health professionals in health system research and planning activities—how professionals are engaged and how this varies across national contexts- is limited, particularly in international initiatives. There is a need to identify gaps in the planning of engagement activities to inform the design and successful implementation of future international efforts to improve the responsiveness of health systems to the changing needs of patients and professionals. The aim of this study was to explore how primary care professionals were engaged in the design and implementation plans of an international health policy study led by the Organisation for Economic Co-operation and Development (OECD). The OECD’s international PaRIS survey measures and disseminates information on patient-reported outcome and experience measures (PROMs and PREMs) of people living with chronic conditions who are managed in primary care. A documentary analysis of 17 written national implementation plans (country roadmaps) was conducted between January and June 2023. Two reviewers independently performed the screening and data abstraction and resolved disagreements by discussion. We reported the intended target primary care professionals, phase of the study, channel of engagement, level of engagement, and purpose of engagement. All 17 countries aimed to engage primary care professionals in the execution plans for the international PaRIS survey. While organisations of primary care professionals, particularly of family doctors, were the most commonly targeted group, variation was found in the timing of engagement activities during the different phases of the study and in the level of engagement, ranging from co-development (half of the countries co-developed the survey together with primary care professionals) to one-off consultations with whom. International guidance facilitated the participation of primary care professionals. Continuous collaborative efforts at the international and national levels can foster a culture of engagement with primary care organisations and individual professionals and enhance meaningful engagement of primary care professionals.

A healthy working life is fundamental for individuals and society. To date, increasingly research connects the earlier, pre-working life to later working life experiences and beyond, recognizing that a worker’s health and exposure starts before the working life begins. The research, however, often lacks a fundamental understanding of (i) the underlying mechanisms and pathways accounting for differences in different life stages and (ii) the role of the social environment in shaping working life experiences. By integrating a life course perspective in our research and crossing disciplinary borders in rigorous, collaborative research, we may get a better understanding of the complex and dynamic interplay between work, environment and health. A life course perspective for work environment and health research A life course perspective in work environment and health research emphasizes the importance of prior life experiences, including the environments in which individuals were raised and exposed, their familial and educational backgrounds, and their physical and mental health status before entering the workforce (1, 2). Life course research in different disciplines has been instrumental in developing more robust causal models (3, 4), particularly for understanding developmental health trajectories and socioeconomic health inequalities (eg, 5–7). Adopting an interdisciplinary life course perspective in work environment and health research helps researchers answering questions as to whether and how the timing, duration, intensity, and context of past and present exposures (ie, pre-working, working, and non-working exposures) are associated with later life work and health outcomes. For instance, the ‘exposome paradigm’ is a concept used to describe the sum of occupational and environmental exposures an individual encounters throughout life, and how these exposures impact biology and health (8). In exposome research, a broad range of genetic, biological, chemical, physical, social and lifestyle factors is examined throughout the life course to provide a comprehensive picture of potential risk factors impacting working life health (9). In exposome research and beyond, it is important to examine how the exposure-outcome relationships are shaped by specific social, cultural and historical contexts (2). The conceptual framework of the ‘Social Exposome’ may help to integrate the social environment in conjunction with the physical environment into the exposome concept (10). Moreover, focusing on both historical and contemporary contexts is essential not only for advancing research but also for informing policy and practice, for example by identifying entry points for interventions. Exposures during the life course During the individual’s life course, several vulnerable time windows for the impact of a multitude of exposures that potentially harm, protect or promote health, eg, occupational, environmental and social, can be distinguished. The (combinations of) exposures may operate in different life stages and contexts and – directly or indirectly via intergenerational transmission – contribute to health (figure 1). The individual may be particulary sensitive to harmful exposures or adverse experiences during developmental life stages, ie, pre/perinatal, childhood, adolescence, pregnancy and menopause/andropause. Other life stages may reflect vulnerable time windows due to a clustering of exposures, eg, work and family demands during parenthood, or an accumulation of exposures during the (working) life course at retirement and post-retirement age. As illustrated in figure 1, occupational exposure(s) can be divided in exposure through the parents’ exposure (early in life) and an individuals’ own exposure (later in life). Already in the pre/perinatal life stage, occupational exposure starts through the intergenerational transmission of the parents’ occupational exposures. Current and bioaccumulated occupational exposure of chemicals and particles in the father at the time of conception can affect sperm quality. Together with the mother’s exposure to occupational exposures of chemicals and particles prior to conception – or chemicals, particles, physical factors, ergonomic load, organizational and (psycho-)social conditions at work during pregnancy – this may affect fetal development and later disease development during the child’s life course (11–15). During childhood, the growing child is exposed to parental occupational exposure(s), directly through chemicals and particles in the work clothes and skin or indirectly through organizational and psychosocial factors in the work environment that may increase the risk for mental and physical health problems in parents, which in turn may affect their parental rearing quality (16, 17). During adolescence and early adulthood, individuals usually encounter their first direct occupational exposures through their first (student) job or jobs. Already from this life stage, occupational exposures may accumulate during the (working) life course and may affect not only the active working life but also the post working life. Also important to note is that brain plasticity is not limited to childhood, adolescence or young adulthood as it persists throughout life. Some studies indicate that high physical and chemical exposure during this life stage, can increase the risk of disease later in life (18). A poor psychosocial school or work environment in younger years may also increase the risk of adverse labour market outcomes and mental health problems later in life (19, 20). In adulthood, men and women often start with (the planning of) family formation. Some occupational exposures affect fecundability, others can increase the risk of pregnancy-related disease, such as preeclampsia, hypertension or diabetes, or affect the offspring (21, 22). Chemicals, heat and stress-related exposures affect the ability to conceive. During pregnancy, the bodily and mental systems are vulnerable with changes in the endocrine and inflammation response that can dysregulate the HPA-axis, resulting in a prolonged stress response. The placenta can filter out many hazards, but not all toxicants, such as methylmercury and arsenic (23, 24). Physical exposure, such as noise and vibration, but also shift and night work can affect the womb and cause fetal growth restriction, preterm birth, and hearing impairment (eg, 12, 13, 25–27). During parenthood, occupational exposures may affect the parents’ (mental) health and work-family balance (28, 29). Many chemical and physical exposures have now manifested in disease, eg, allergy, asthma and musculoskeletal diseases (28). During menopause in women, with a drastic decrease in oestrogen, and the slow testosterone decline in men (sometimes referred to as andropause), dysregulations of the hormone system may disrupt and affect the individual’s susceptibility for occupational exposures in a way similar to environmental exposures (30). Towards retirement, the total cumulative occupational exposure burden over the working life course and the current exposure will affect the ability to stay at work and in the labor market. Post retirement, most direct occupational exposures have ceased, but others may have (bio-) accumulated over time and may cause health problems that manifest after retirement (31, 32). Along with occupational exposures, a multitude of other exposures are present during the entire life course that may operate across different contexts to contribute to health (see figure 1). For instance, chemical, physical and social stressors during the life course leave traces (‘memories’) on the molecular and tissue levels that may affect later life health (33). Epigenetic marks act as heritable memories in the cell as they respond to different endogenous and exogenous signals and can be propagated from one generation of cells to the next generation of cells (33). Next to the epigenetic marks, the social environment and social determinants of health during the life course, eg, socio-economic and lifestyle factors, social relationships, social cohesion and support, are known to impact health and add to the multitude of exposures to be examined, among others in conjunction with the environmental exposome (eg, 34). In residential, family and school contexts, exposures such as air pollution, drinking water pollution, noise, artificial light at night, limited access to green space and crowding may play a role, as can adverse childhood experiences (eg, 35, 36). Moreover, on the overarching societal context, legislations, labor market conditions, norms, values and cultural aspects may affect worker health (2, 37). Main knowledge gaps and challenges Both conceptual and empirical challenges have to be tackled when conducting work environment and health research with an interdisciplinary life course perspective. On the conceptual level, different paradigms and nomenclature still exist in the various disciplines examining the impact of (occupational) exposures on later life health outcomes, which contributes to fragmented research and publication thereof in specialized journals. On the empirical level, questions arise such as: Is it feasible to examine mechanisms and pathways across different exposure levels considering a life course perspective? Is the follow-up duration of existing birth and other cohorts sufficient to address the dynamic interplay between the work environment and health? Are the multifaceted, constantly changing contexts captured? Effect sizes are often small on an individual level and statistical power decreases when several rare assumptions have to be fulfilled to examine clusters or combinations of exposures and contexts in relation to health outcomes. Big data, interdisciplinary research protocols and innovative, advanced statistical models to capture the life course perspective are needed to proceed beyond the exposome studies that are currently being finalized within the EU Horizon 2020 exposome call (https://www.humanexposome.eu). Moreover, a better understanding is needed of how occupational, environmental and social exposures affect individuals (i) in vulnerable time windows, eg, do exposures contribute to health advantages and/or disadvantages, and (ii) while transitioning between and within different life stages (38). Studies in different disciplines have focused on the childhood and retirement life stages, see eg, the research on the school-to-work transition or the work-to-retirement transition (39–41), but little is known about the menopause or andropause life stage. Last, rigorous examinations of different lifecourse models (eg, sensitive periods) and exposure models (eg, current, first, last, peak, single, chronic or accumulated), and their impact on health are needed within and across the different vulnerable time windows and life stages as exposure-outcome relationships may differ and thus call for targeted (preventive) policies and practices (42–44). Interdisciplinary research opportunities The challenges towards a better understanding of the complex and dynamic interplay between the work environment and health provide ample opportunities for rigorous, collaborative quantitative and in-depth qualitative life course research across different research strands. Researchers from different disciplines, such as occupational and environmental medicine, epidemiology, toxicology, health science, sociology, psychology, demography, public (mental) health, and genetics to name a few, should not shy away from the complexity, but embrace the opportunity to use their knowledge and skills to collectively address relevant research questions. Interdisciplinary research opportunities are already present today and will emerge even more in the years to come as more cohorts designed as birth cohorts or multi-generational cohorts mature (eg, LifelinesNext, 45). Researchers have or get access to (national) registers, databases with individual-level internal and external exposure information and neighbourhood-level exposure information or linkages of all these exposure and health data, allowing them to examine the impact of exposures in advanced causal models on later life health. To illustrate the value of and research opportunities with existing data, Ubalde-Lopez and colleagues (46) recently argued that parental work-related data collected in birth cohorts is a valuable yet underutilized resource that could be exploited more fruitfully in the collaboration between birth cohort research, occupational epidemiology and sociology. Having said that, the authors also refer to the possible constraints of eg, cross-national comparative research in terms of technical (ie, harmonization) and ethical challenges (46). In conclusion, to move research on the work environment and health forward, we call for a more integrated, interdisciplinary approach that considers the timing and accumulation of occupational, environmental and social exposures over the life course.

Background: Consumer involvement in health research is when patients, their families and caregivers work with researchers on research projects. Despite the growing expectation for health services to facilitate the involvement of consumers in research, the practical integration of this approach is an ongoing process, with limited research conducted into how Australian health services can support this practice. This study explored consumer perspectives on the barriers and solutions to enabling consumer involvement in research within an Australian tertiary hospital and health service, and staff perspectives on the solutions to facilitating consumer involvement. A prior survey had identified barriers to consumer involvement from the staff perspective. The broad aim was to inform the development of a framework to help promote consumer involvement in research within the health service. Methods: A Nominal Group Technique (NGT) was utilised with groups comprised of health service consumers and staff. Three health consumers were co-researchers in the full life-cycle of this study and are included as authors. Results: Ten consumers and 14 staff participated across three sessions ranging from one to three hours. For consumers, barriers to their involvement were grouped into seven domains: (1) lack of connection with researchers/research projects, (2) low research literacy, (3) structural barriers, (4) lack of acknowledgement, (5) implementation challenges, (6) inadequate information provision, and (7) representation concerns. Solutions to enabling involvement were grouped into five domains: (1) support to connect with researchers/research projects, (2) adequate information provision, (3) incentive for involvement, (4) acknowledgement, and (5) balanced representation. Staff ideas for solutions were grouped into five domains: (1) support to connect with consumers, (2) support to involve consumers, (3) access to funds to remunerate consumers, (4) more time to involve consumers, and (5) staff training. Conclusion: Through an NGT methodology, this study delivered a nuanced comprehension of perspectives on involving consumers in research from both health service consumers and staff. These findings serve as a foundation for identifying strategies that foster enhanced and refined relationships between consumers and researchers, advancing the collaborative landscape in health research. The findings from this project offer valuable strategies for researchers to better engage consumers in research and for consumer groups to enhance their involvement. Additionally, these insights could be used by other health services to advocate for essential resources. Plain English Summary: Consumer involvement in health research is when patients, their families, and caregivers work with researchers on research projects. While there is a growing expectation for health services to promote the involvement of consumers in health service research, it is still a work in progress, especially in Australia, where there hasn't been much research done on this topic. This study looked at what consumers and staff at an Australian hospital thought would hinder or help consumers to become involved in health research. The study used a method called the Nominal Group Technique (NGT), where groups of staff and consumers met for sessions ranging from one to three hours to share and prioritise their ideas. Consumers thought that barriers to their involvement included difficulty connecting with researchers or projects, not knowing much about research, and personal barriers to involvement (such as lack of childcare). They believed that better connection with researchers, information, incentives for involvement, and ensuring everyone's voices are heard were possible solutions. Staff also had ideas for solutions, like providing support to connect with consumers and more time for research activities. Overall, this study describes what consumers and staff think about working together on research. These findings can help develop strategies for building relationships between consumers and researchers, advancing collaborative efforts in health research. [ABSTRACT FROM AUTHOR]

Healthcare professionals have first-hand experience with patients in clinical practice and the dynamics in the healthcare system, which can be of great value in the design, implementation, data analysis and dissemination of research study results. Primary care professionals are particularly important as they provide first contact, accessible, coordinated, comprehensive and continuous people-focused care. However, in-depth examination of the engagement of health professionals in health system research and planning activities—how professionals are engaged and how this varies across national contexts- is limited, particularly in international initiatives. There is a need to identify gaps in the planning of engagement activities to inform the design and successful implementation of future international efforts to improve the responsiveness of health systems to the changing needs of patients and professionals. The aim of this study was to explore how primary care professionals were engaged in the design and implementation plans of an international health policy study led by the Organisation for Economic Co-operation and Development (OECD). The OECD's international PaRIS survey measures and disseminates information on patient-reported outcome and experience measures (PROMs and PREMs) of people living with chronic conditions who are managed in primary care. A documentary analysis of 17 written national implementation plans (country roadmaps) was conducted between January and June 2023. Two reviewers independently performed the screening and data abstraction and resolved disagreements by discussion. We reported the intended target primary care professionals, phase of the study, channel of engagement, level of engagement, and purpose of engagement. All 17 countries aimed to engage primary care professionals in the execution plans for the international PaRIS survey. While organisations of primary care professionals, particularly of family doctors, were the most commonly targeted group, variation was found in the timing of engagement activities during the different phases of the study and in the level of engagement, ranging from co-development (half of the countries co-developed the survey together with primary care professionals) to one-off consultations with whom. International guidance facilitated the participation of primary care professionals. Continuous collaborative efforts at the international and national levels can foster a culture of engagement with primary care organisations and individual professionals and enhance meaningful engagement of primary care professionals. [ABSTRACT FROM AUTHOR]

Six planetary boundaries have already been exceeded, including climate change, loss of biodiversity, chemical pollution, and land-system change. The health research sector contributes to the environmental crisis we are facing, though to a lesser extent than healthcare or agriculture sectors. It could take steps to reduce its environmental impact but generally has not done so, even as the planetary emergency worsens. So far, the normative case for why the health research sector should rectify that failure has not been made. This paper argues strong philosophical grounds, derived from theories of health and social justice, exist to support the claim that the sector has a duty to avoid or minimise causing or contributing to ecological harms that threaten human health or worsen health inequity. The paper next develops ideas about the duty’s content, explaining why it should entail more than reducing carbon emissions, and considers what limits might be placed on the duty. [ABSTRACT FROM AUTHOR]

Background: Several bibliometric analyses have been conducted in the Eastern Mediterranean Region (EMR), however, there is limited data from such analyses for the establishment of national or regional health research agenda. Aim: To assess the biomedical and health research outputs in EMR countries for 2004--2018 and their alignment with the regional strategic health priority areas identified by the WHO Regional Office for the Eastern Mediterranean. Methods: We searched and reviewed health-related articles indexed in PubMed and originating from EMR countries from 2004 to 2018 and used these as indicators of the country's total biomedical research publication level. Data from a very large collection of over 300 000 articles were weighted to EMR's contribution to the global research output. We used the mean and standard deviation to summarise the continuous variables and used frequencies and percentages to summarise the categorical variables. Results: Biomedical research publication in the EMR increased between 2004 and 2018. Five countries -- Islamic Republic of Iran (43%), Egypt (14%), Saudi Arabia (11%), Pakistan (8%), and Tunisia (6%) -- contributed 82% of all the publications, while the other countries contributed less than 4%. On average, EMR contributed 2.0% of the global biomedical research publications and 3.12 publications per 100 000 population for 2004--2018. Conclusion: Biomedical and health research publication increased unevenly across the EMR countries during the study period. Considering the complexity of the public health challenges in the region, there is a need for multidisciplinary and holistic approaches to health research to generate evidence for policy and to improve clinical and public health outcomes. [ABSTRACT FROM AUTHOR]

Critical realism provides an alternative to positivism and interpretivism. It foregrounds ontology and an evaluative approach to knowledge, while promoting eclectic reasoning, transdisciplinarity, and ethical research across the quantitative/qualitative, macro/micro and other divides. Health researchers have usefully employed critical realism, though it has also been dismissed as strange, a source of self-deception and hubris. Furthermore, it has been accused of dehumanizing many people. Responding to these charges, this article makes the case for carefully employing critical realism within and beyond social studies of health. It first outlines some basic critical realist tenets before summarizing two exemplars within the sociology of health, illness and medical work. The discussion section, observing the principle of hermeticism, engages with some criticisms before offering a prolegomenon to research on the COVID-19 pandemic response. In conclusion, a 'radical' proposal is ventured for possible transformative action so that society is less hierarchical, more equal and salutogenic. [ABSTRACT FROM AUTHOR]

Background: While there has been a long recognition of the importance of race equality in health and care research, there is a lack of sustained action among research funding and research performing organisations to address racial equality in public involvement. This paper describes how the UK's National Institute for Health and Care Research (NIHR) convened a Race Equality Public Action Group (REPAG), which co-developed with public contributors and stakeholders a Race Equality Framework – a tool for addressing racial equality in public involvement. Methods: The REPAG, through meetings and discussions, defined the focus of the Framework, and developed an initial draft of the Framework. Public contributors identified the need for broader consultation with other public members. Three community consultation events with a total of 59 members of Black African-, Asian- and Caribbean-heritage communities were held to seek their views on health and care research generally and on the draft Framework specifically. The draft Framework was modified and piloted among 16 organisations delivering health and care research. Following feedback from the pilot, the Framework was modified and prepared for publication. Results: The Framework is designed as a self-assessment tool comprised of 50 questions pertaining to five domains of organisational activity: 1) individual responsibility, 2) leadership, 3) public partnerships, 4) recruitment, and 5) systems and processes. The questions were co-designed with REPAG public members and provide key concepts and elements of good practice that organisations should consider and address on their path to achieving racial competence. The accompanying materials provide implementation guidance with 20 detailed steps, case studies of actions taken in seven pilot organisations, and links to additional resources. The pilot demonstrated the feasibility of conducting a meaningful self-assessment over a period of three months and the usefulness of the results for developing longer-term action plans. Conclusion: The Framework represents the first self-assessment tool for addressing racial equality in public involvement. Co-design with REPAG public members enhanced its authenticity and practicality. Organisations in the field of health and care research and any other organisations that use partnerships with the public are encouraged to adopt the Framework. Plain English summary: For a long time, race equality within research has not been a priority. To address this the NIHR created a group to come up with solutions to tackle this – the Race Equality Public Action Group. Recognising the need to help research organisations with how they involved members of the public from diverse groups, the Race Equality Framework was born. The Race Equality Framework was devised to help organisations become more inclusive, develop better links with diverse communities and make their work more equitable. Consultation with members of the public from Black African-, Asian- and Caribbean-heritage communities were held and were essential in developing the Framework. Sixteen organisations who are involved in health and care research were recruited as pilot partners. They worked through the Framework and provided further feedback and input. The final product is a self-assessment tool which comprises of 50 questions across five domains. These domains are: 1) individual responsibility, 2) leadership, 3) public partnerships, 4) recruitment, and 5) systems and processes. The questions are designed to promote reflection and improve organisational good practice. This is the first tool of its kind, and we recommend its use for health and care research organisations that work closely and develop partnerships with members of the public. [ABSTRACT FROM AUTHOR]

The use of Critical Race Theory, Photovoice, and Community-Based Participatory Research has helped uncover the root causes of issues such as systemic racism in the fields of public health and health promotion. Often, we see studies using traditional research methods to investigate potential causal factors of disparities in minoritized communities report only quantitative data. While these data are imperative for understanding the severity of disparities, quantitative-only approaches cannot address nor can they improve the critical root causes of these disparities. As a team of BIPOC graduate students in public health, we conducted a community-based participatory research project using Photovoice methodology to explore inequities in Black and Brown communities exacerbated during the COVID-19 pandemic. The participatory nature of this research revealed cumulative challenges across the social determinants of health in New Haven and Bridgeport, Connecticut. It allowed us to engage in local-level advocacy to promote health equity as our findings illuminated the need for community-led and community-engaged action. Health and racial inequities cannot be effectively addressed if public health research and programming do not collaborate with the community to build community capacity, empowerment, and trust. We describe our experiences doing community-based participatory research to investigate inequities and provide reflections on their value for public health students. As responses to health inequities and disparities become more politically polarized in the United States, it is critical for public health and health education students to use research methodologies that elevate communities that have been historically marginalized and neglected. Together, we can catalyze equitable change. [ABSTRACT FROM AUTHOR]

Youth mental health has been significantly impacted by COVID-19, with concerns of rising anxiety-related and depressive symptoms and reduced quality of life. This study provides a nuanced understanding of mental health stressors and supports in the lives of youth during the pandemic. Using Collaborative Filmmaking, an embodied, visual, and participatory research method, participants in Pittsburgh, Pennsylvania, were trained to create, analyze, and screen films about mental health. The films elucidated numerous stressors impacting youth mental health, including educational stressors (e.g., academic pressure and relationships with teachers), personal and social stressors (e.g., social and cultural expectations), and current events (e.g., the election and the political system). Supports included individual level supports (e.g., hobbies, self-care, spending time outdoors), and interpersonal level supports (e.g., family and socializing). Several themes were discussed as both stressors and supports, such as family, COVID-19, and social media. Overall, educational stressors are major contributors to adverse mental health symptoms among youth, which have been magnified by the COVID-19 pandemic. Youth discussions of the importance of self-care and engaging in healthy hobbies demonstrated strong awareness about maintaining mental health, though structural-level recommendations are still needed to improve youth mental health. Screening the Collaborative Films with the public illuminated several additional opportunities for action, including structural and social actions (e.g., changing policies and social norms around mental health). Given the structural nature of the stressors mentioned by participants, systemic changes as well as policy level action and programming are needed to address the intersectional nature of current mental health concerns among youth. [ABSTRACT FROM AUTHOR]

Just-in-time adaptive interventions (JITAIs) are a novel approach to mobile health (mHealth) interventions, sending contextually tailored behavior change notifications to participants when they are more likely to engage, determined by data from wearable devices. We describe a community participatory approach to JITAI notification development for the myBPmyLife Project, a JITAI focused on decreasing sodium consumption and increasing physical activity to reduce blood pressure. Eighty-six participants were interviewed, 50 at a federally qualified health center (FQHC) and 36 at a university clinic. Participants were asked to provide encouraging physical activity and low-sodium diet notifications and provided feedback on researcher-generated notifications to inform revisions. Participant notifications were thematically analyzed using an inductive approach. Participants noted challenging vocabulary, phrasing, and culturally incongruent suggestions in some of the researcher-generated notifications. Community-generated notifications were more direct, used colloquial language, and contained themes of grace. The FQHC participants' notifications expressed more compassion, religiosity, and addressed health-related social needs. University clinic participants' notifications frequently focused on office environments. In summary, our participatory approach to notification development embedded a distinctive community voice within our notifications. Our approach may be generalizable to other communities and serve as a model to create tailored mHealth notifications to their focus population. [ABSTRACT FROM AUTHOR]

In this post-workshop summary, we describe three ethical challenges related to engaging people with lived experience as partners in health research. We share learnings and reflective prompts from our workshop delivered as part of the Canadian Bioethics Society Workshop and Community Forum held in May 2023. [ABSTRACT FROM AUTHOR]

BackgroundPatients experiencing systemic patterns of disadvantage, such as racial/ethnic minorities and those with limited English proficiency, are underrepresented in research. This is particularly true for large pragmatic trials of potentially sensitive research topics, such as advance care planning (ACP). It is unclear how phone outreach may affect research participation by underrepresented individuals.ObjectiveTo assess the effect of phone outreach, in addition to standard mail survey recruitment, in a population-based ACP pragmatic trial at three academic health systems in California.DesignRetrospective cohort study PATIENTS: Primary care patients with serious illness were mailed a survey in their preferred language. Patients who did not initially respond by mail received up to three reminder phone calls with the option of survey completion by phone.Main measuresEffect of phone outreach on survey response rate associated with respondent demographic characteristics (e.g., Social Vulnerability Index [SVI], range 0 (low) to 1 (high)).ResultsAcross the health systems, 5998 seriously ill patients were mailed surveys. We obtained completed surveys from 1215 patients (20% response rate); 787 (65%) responded after mail alone and 428 (35%) participated only after phone outreach. Patients recruited after phone outreach compared to mail alone were more socially vulnerable (SVI 0.41 v 0.35, P < 0.001), were more likely to report being a racial/ethnic minority (35% v 28%, P = 0.006), and non-English speaking (16% v 10%, P = 0.005). Age and gender did not differ significantly. The inclusion of phone outreach resulted in a sample that better represented the baseline population than mail alone in racial/ethnic minority (28% mail alone, 30% including phone outreach, 36% baseline population), non-English language preference (10%, 12%, 15%, respectively), and SVI (0.35, 0.37, 0.38, respectively).ConclusionsPhone outreach for a population-based survey in a pragmatic trial concerning a potentially sensitive topic significantly enhanced recruitment of underrepresented seriously ill patients.

The intricate interplay between the gut microbiome and colorectal cancer (CRC) presents novel avenues for early diagnosis and prognosis, crucial for improving patient outcomes. This comprehensive review synthesizes current findings on the gut microbiome’s contribution to CRC pathogenesis, highlighting its potential as a biomarker for non-invasive CRC screening strategies. We explore the mechanisms through which the microbiome influences CRC, including its roles in inflammation, metabolism, and immune response modulation. Furthermore, we assess the viability of microbial signatures as predictive tools for CRC prognosis, offering insights into personalized treatment approaches. Our analysis underscores the necessity for advanced metagenomic studies to elucidate the complex microbiome-CRC nexus, aiming to refine diagnostic accuracy and prognostic assessment in clinical settings. This review propels forward the understanding of the microbiome’s diagnostic and prognostic capabilities, paving the way for microbiome-based interventions in CRC management.

Background Scientific publications have been growing exponentially, contributing to an oversaturated information environment. Quantifying a research output’s impact and reach cannot be solely measured by traditional metrics like citation counts as these have a lag time and are largely focused on an academic audience. There is increasing recognition to consider ‘alternative metrics’ or altmetrics to measure more immediate and broader impacts of research. Better understanding of altmetrics can help researchers better navigate evolving information environments and changing appetites for different types of research. Objectives Our study aims to: 1) analyse the amount and medium of Altmetric coverage of health research produced by Irish organisations (2017 – 2023), identifying changes over time and 2) investigate differences in the amount of coverage between clinical areas (e.g., nutrition vs. neurology). Methods Using Altmetric institutional access, we will gather data on research outputs published 1 January 2017 through 31 December 2023 from active Irish organisations with Research Organisation Registry (ROR) IDs. Outputs will be deduplicated and stratified by their Australian and New Zealand Standard Research Classification relating to ≥1 field of health research: Biological Sciences, Biomedical and Clinical Sciences, Chemical Sciences, Health Sciences, and Psychology. We will clean data using R and perform descriptive analyses, establishing counts and frequencies of coverage by clinical area and medium (e.g., traditional news, X, etc.); data will be plotted on a yearly and quarterly basis where appropriate. Results and Conclusions Improved understanding of one’s information environment can help researchers better navigate their local landscapes and identify pathways for more effective communication to the public. All R code will be made available open-source, allowing researchers to adapt it to evaluate their local landscapes.

Summary: Gender equality has been a crosscutting issue in Horizon 2020 with three objectives: gender balance in decision-making, gender balance and equal opportunities in project teams at all levels, and inclusion of the gender dimension in research and innovation content. Between 2017 and 2022, the EU funded, in collaboration with national agencies, 13 transnational projects under “GENDER-NET Plus” that explored how to best integrate both sex and gender into studies ranging from social sciences, humanities, and health research. As the projects neared completion, forty researchers from these interdisciplinary teams met in November 2022 to share experiences, discuss challenges, and consider the best ways forward to incorporate sex and gender in research. Here, we summarize the reflections from this workshop and provide some recommendations for i) how to plan the studies (e.g., how to define sex and/or gender and their dimensions, rationale for the hypotheses, identification of data that can best answer the research question), ii) how to conduct them (e.g., adjust definitions and dimensions, perform pilot studies to ensure proper use of terminology and revise until consensus is achieved), and iii) how to analyze and report the findings being mindful of any real-world impact.

Abstract Africa faces a significant burden of infectious diseases, including Malaria and HIV/AIDS, along with an increasing prevalence of non-infectious diseases such as diabetes and cancer. This dual health challenge is amplified by socioeconomic difficulties, restricted access to healthcare, and lifestyle changes, thus present unique scientific needs. Effectively addressing these issues requires a skilled scientific workforce adept in comprehensive healthcare strategies. This analysis explores the critical landscape of health research in Africa, emphasizing the unique opportunity presented by the continent’s youthful population, projected to reach almost 1 billion by 2050. The youth’s innovative potential and fresh perspectives offer a chance to overcome development barriers in health research. Nevertheless, challenges such as under-resourced education, limited research training, inadequate mentorship, and funding difficulties persist. This paper urgently calls upon African leaders, international partners, and stakeholders to prioritize health research, mobilize funding, forge strategic partnerships, and empower the youth as essential steps to capitalize on the continent’s dynamic youth for breakthrough health outcomes. Such investments are vital not just for health but for the overall economic, social, and strategic growth of the continent. Through shared responsibility and a united effort, the potential of African youth can be harnessed, leading to transformative research, improved health outcomes, and a prosperous future. This perspective represents the collective voice of passionate young researchers and advocates across Africa, calling for a new era of health research on the continent.

Abstract Background Studying global health problems requires international multidisciplinary teams. Such multidisciplinarity and multiculturalism create challenges in adhering to a set of ethical principles across different country contexts. Our group on health system responses to violence against women (VAW) included two universities in a European high-income country (HIC) and four universities in low-and middle-income countries (LMICs). This study aimed to investigate professional and policy perspectives on the types, causes of, and solutions to ethical challenges specific to the ethics approval stage of the global research projects on health system responses to VAW. Methods We used the Network of Ethical Relationships model, framework method, and READ approach to analyse qualitative semi-structured interviews (n = 18) and policy documents (n = 27). In March-July 2021, we recruited a purposive sample of researchers and members of Research Ethics Committees (RECs) from the five partner countries. Interviewees signposted policies and guidelines on research ethics, including VAW. Results We developed three themes with eight subthemes summarising ethical challenges across three contextual factors. The global nature of the group contributed towards power and resource imbalance between HIC and LMICs and differing RECs’ rules. Location of the primary studies within health services highlighted differing rules between university RECs and health authorities. There were diverse conceptualisations of VAW and vulnerability of research participants between countries and limited methodological and topic expertise in some LMIC RECs. These factors threatened the timely delivery of studies and had a negative impact on researchers and their relationships with RECs and HIC funders. Most researchers felt frustrated and demotivated by the bureaucratised, uncoordinated, and lengthy approval process. Participants suggested redistributing power and resources between HICs and LMICs, involving LMIC representatives in developing funding agendas, better coordination between RECs and health authorities and capacity strengthening on ethics in VAW research. Conclusions The process of ethics approval for global research on health system responses to VAW should be more coordinated across partners, with equal power distribution between HICs and LMICs, researchers and RECs. While some of these objectives can be achieved through education for RECs and researchers, the power imbalance and differing rules should be addressed at the institutional, national, and international levels. Three of the authors were also research participants, which had potential to introduce bias into the findings. However, rigorous reflexivity practices mitigated against this. This insider perspective was also a strength, as it allowed us to access and contribute to more nuanced understandings to enhance the credibility of the findings. It also helped to mitigate against unequal power dynamics.

Abstract Background Partnerships between Higher Education Institutions (HEIs) in the global north and south have commonly been used as a vehicle to drive global health research and initiatives. Among these initiatives, include health system strengthening, research capacity building, and human resource training in developing countries. However, the partnership functioning of many global north-south partnerships still carry legacies of colonialism through unrecognized behavior patterns, attitudes, and belief systems in how they function. Even with research literature calling for a shift from equality to equity in the functioning of these partnerships, many still struggle with issues of complex and unspoken power dynamics. To understand the successes and challenges of north-south partnerships, this paper explored partnership development and functioning of a northern and multi-southern HEIs partnership focused on nutrition education and research. Methods A qualitative research approach was used; data were collected through in-depth interviews (IDIs) with questions developed from the Bergen Model of Collective Functioning (BMCF). Thirteen IDIs were conducted with partners from all institutions including stakeholders. Findings The partnership was built on the foundation of experiences and lessons of a previous partnership. Partners used these experiences and lessons to devise strategies to improve partnership inputs, communication, leadership, roles and structures, and maintenance and communication tasks. However, these strategies had an impact on partnership functioning giving rise to issues of inequitable power dynamics. The northern partner had two roles: one as an equal partner and another as distributor of project funds; this caused a conflict in roles for this partner. The partners distinguished themselves according to partner resources – two partners were named implementing partners and two named supportive partners. Roles and partner resources were the greatest contributors to power imbalances and caused delays in project activities. Conclusion Using the BMCF to examine partnership dynamics illuminated that power imbalances caused a hierarchical stance in the partnership with northern partners having overall control and power of decision-making in the partnership. This could impact the effectiveness and sustainability of project in the southern institutions going forward.

Background: Strengthening the functions of health research and taking a systematic approach to the development of science and technology are essential for overcoming current challenges in health sector. Therefore, the functional pathology of current research plays a crucial role in highlighting the gap between what is and what should be, thereby illuminating the path of scientific development in health sector with a focus on current challenges. Methods: In this study, interviews with experts, review of documents and conducting an expert panel were used. The method of data analysis is qualitative analysis with a framework analysis approach. A total of 32 experts were selected from heads of research centers, experts of the national innovation system, science and technology policy, health policy, graduate students and faculty members, senior researchers, NGOs and international experts. A review of relevant national and international documents has been done to strengthen and analyze the findings. The content analysis of the findings of two phases was carried out with a framework analysis approach and was presented in an expert panel consisting of representatives of the interviewees. The results of the panel were analyzed and to draw the future triangle consisting of the weight of the past, the push of the present and the pull of the future. Results: The findings of the study have been analyzed in the framework of the future triangle, including the weight of the history, the push of the present, and the pull of the future. The weight of the history and the push of the present were identified and analyzed in the form of past and present challenges of the health research system in seven main functions. Including stewardship and leadership, coordination of research and policymaking, translation of policies and upstream documents at the operational level of research, resource management, performance evaluation and monitoring, human resource empowerment, and evidence-informed policymaking. The pull of future includes the need to draw a coherent national macro image with a forward-looking, participatory and transparent approach, in which attention is paid to the management of conflict of interests, coherence in resource management and strengthening of intersectoral collaborations. Conclusion: The main solutions to address the current challenges in the country's health research system include agreement on concepts, a unified vision and stable procedures, strengthening the relationship between different levels of management (inter-ministerial, ministerial, and university), enhancing education and research at the level of medical ministry and universities, establishing appropriate structures for knowledge translation, strengthening national funds supporting the research, reforming the evaluation system, and undertaking a fundamental review of human resource empowerment model.

Abstract Background Successfully recruiting male participants to complete a healthcare related study is important for healthcare study completion and to advance our clinical knowledgebase. To date, most research studies have examined the barriers and facilitators of female participants in longitudinal healthcare-related studies with limited information available about the needs of males in longitudinal research. This systematic review examines the unique barriers and facilitators to male recruitment across longitudinal healthcare-related research studies. Methods Following PRIMSA guidelines, MEDLINE, Embase, CINAHL and Web of Science databases were systematically searched using the terms recruitment and/or retention, facilitators and/or barriers and longitudinal studies from 1900 to 2023 which contained separate data on males aged 17–59 years. Health studies or interventions were defined longitudinal if they were greater than or equal to 12 weeks in duration with 3 separate data collection visits. Results Twenty-four articles published from 1976–2023 met the criteria. One-third of the studies had a predominantly male sample and four studies recruited only male participants. Males appear disinterested towards participation in health research, however this lack of enthusiasm can be overcome by clear, non-directive communication, and studies that support the participants interests. Facilitating factors are diverse and may require substantial time from research teams. Conclusions Future research should focus on the specific impact of these factors across the spectrum of longitudinal health-related studies. Based on the findings of this systematic review, researchers from longitudinal health-related clinical trials are encouraged to consider male-specific recruitment strategies to ensure successful recruitment and retention in their studies. Registration This systemic review is registered with the PROSPERO database (CRD42021254696).

Dear Editor, Health policy is course of actions developed by policy makers and senior managers in the areas of financing, resource generation and health service delivery to promote, restore, and maintain health of the community. In fact, health policies are guides for formulating health programs and actions by front-line managers. Research evidence should be used for health policy making. A policy brief is a short document that presents the findings and recommendations of a research project to policy makers and senior managers. It is a tool for providing policy advice to health policy makers, which includes a summary of the issue or problem, solutions to solve the problem and their advantages and disadvantages. The purpose of the policy brief is to help policy makers or people influencing the policy making process to make better and faster decisions. Therefore, the policy brief should include background information to fully understand the problem and its root causes, convince the policy maker of the necessity of solving the problem, provide the necessary information on the best options for solving the problem and encourage the policy maker to make the right decision. The main and mandatory components of a policy brief are the title, executive summary, introduction, policy problem, research method and findings, policy recommendations and policy implications. Optional components of a policy brief include columns, case studies, tables, figures, graphics, photographs, authors' names, acknowledgments, publication details, and references.

Introduction: Data-driven research has improved paediatric cancer outcomes for children. However, challenges in sharing data between institutions prevent the use of artificial intelligence (AI) to address substantial unmet needs in children diagnosed with cancer. Harmonising collected data can enable the application of AI for a greater understanding of paediatric cancers. The main goal of the paper was to analyse the currently used childhood cancer databases to identify a core of variables able to capture the most relevant data on the diagnosis and treatment of children and adolescents with cancer. Methods: We arbitrarily identified different types of existing databases dedicated to collecting data of patients with solid tumours, Umbrella, FAR-RMS; PARTNER; ERN PAEDCAN Registry; INSTRUCT and INRG; the common data elements for Rare Disease by Joint Research Centre. The different elements of the CRFs were analysed and ranked “essential” and “good to have”. Domains that included a group of variables structurally connected were identified. Each variable was defined by name, data type, description, and permissible values. Results: We identified six structural domains: Patient registration, Personal information, Disease History, Diagnosis, Treatment, and Follow-up and Events. For each of them, “essential” and “good to have” variables were defined. Discussion: Data harmonisation is essential for enhancing integration and comparability in research. By standardizing data formats and variables, researchers can facilitate data sharing, collaboration, and analysis across multiple studies and datasets. Embracing data harmonization practices will advance application of AI, scientific knowledge, improve research reproducibility, and contribute to evidence-based decision-making in various fields.

Objective: Patient and public involvement (PPI) in health research is now well-established, whilst science, technology, engineering and mathematics (STEM) research has shifted from a focus on science communication alone to public engagement (PE) within its research processes. Despite frequently drawing on similar theoretical influences, and practical motivations, there is often a lack of dialogue between such settings meaning shared learning, practice and evidence from these two sectors are rarely pooled. Methods: In this article, we examine findings from a conceptual review of literature gathered between 1996 and 2019. Results: Analyzing 142 peer-reviewed articles, we ascertain shared definitions and concepts in patient and public involvement and public engagement, identifying key differences and similarities. Conclusion: The literature we review supports the notion that, in terms of origins, there are two distinct traditions, one based in science communication and one based in what we describe as public involvement in shared decision-making. Innovation: We find evidence that the two traditions are converging but our work also calls for the need for further conversations between these two settings, which are exploring intersecting issues but from parallel pathways.

Africa faces a significant burden of infectious diseases, including Malaria and HIV/AIDS, along with an increasing prevalence of non-infectious diseases such as diabetes and cancer. This dual health challenge is amplified by socioeconomic difficulties, restricted access to healthcare, and lifestyle changes, thus present unique scientific needs. Effectively addressing these issues requires a skilled scientific workforce adept in comprehensive healthcare strategies. This analysis explores the critical landscape of health research in Africa, emphasizing the unique opportunity presented by the continent's youthful population, projected to reach almost 1 billion by 2050. The youth's innovative potential and fresh perspectives offer a chance to overcome development barriers in health research. Nevertheless, challenges such as under-resourced education, limited research training, inadequate mentorship, and funding difficulties persist. This paper urgently calls upon African leaders, international partners, and stakeholders to prioritize health research, mobilize funding, forge strategic partnerships, and empower the youth as essential steps to capitalize on the continent's dynamic youth for breakthrough health outcomes. Such investments are vital not just for health but for the overall economic, social, and strategic growth of the continent. Through shared responsibility and a united effort, the potential of African youth can be harnessed, leading to transformative research, improved health outcomes, and a prosperous future. This perspective represents the collective voice of passionate young researchers and advocates across Africa, calling for a new era of health research on the continent. [ABSTRACT FROM AUTHOR]

Qualitative research methods are increasingly used in nutrition and dietetics research. Ethnography is an underexploited approach which seeks to explore the diversity of people and cultures in a given setting, providing a better understanding of the influences that determine their choices and behaviours. It is argued that traditional ethnography, that is, the methodology of living within participant communities, is a dated practice, with roots in colonialism, accessible to only researchers with the means, connections and status to conduct such research, typically white, privileged males. This paper proposes a formal interpretation of 'patchwork ethnography', whereby research is carried out in situ around existing modern‐day commitments of the researcher, thus enabling more researchers within health, nutrition and dietetic practice to benefit from the rich data that can be discovered from communities. This review proposes the concept that pragmatic patchwork ethnography is required, proposing a framework for implementation, providing researchers, particularly within the fields of human nutrition, dietetics and health, the accessibility and means to deploy a meaningful client‐centric methodology. We present pragmatic patchwork ethnography as a modern method for use within multiple healthcare settings, thus adding a progressive brick in the wall of qualitative research. Key points: Ethnography in health research allows professionals to gather rich qualitative data such as lived experiences of participants.However, undertaking traditional ethnography can be demanding, costly and time‐consuming, consequently rendering it inaccessible and challenging to undertake.Pragmatic patchwork ethnography is underpinned by guiding principles of traditional ethnography, enabling researchers to weave the method into existing life and health practice commitments.This paper sets out the seven steps required to deploy pragmatic patchwork ethnography enabling and empowering public health, nutrition and dietetic researchers to undertake valuable qualitative research in a contemporary research landscape. [ABSTRACT FROM AUTHOR]

Many research institutions and funders have recently stated their commitment to actively support and promote 'Equality, Diversity and Inclusion' (EDI) in various aspects of health research including Patient and Public Involvement (PPI). However, translating this commitment into specific research projects presents significant challenges that existing approaches, practical guidelines and initiatives have not adequately addressed. In this paper, we explore how the lack of clear justifications for the EDI commitment in existing guidelines inadvertently complicates the work of those involved with PPI and we stress the need for conceptual clarity for any EDI effort to yield meaningful results. Our focus centres on the first principle of the EDI discourse, 'equality', particularly in the form of 'equality of opportunity' as outlined in current guidance provided by the National Institute of Health Research in the United Kingdom. We examine challenges related to justifying and implementing a general, unspecified commitment to equality of opportunity and explain that this reflects a lack of consensus regarding the moral value of PPI in research – a profound problem that remains unaddressed. We then discuss how the presence of several opposing moral perspectives on PPI, makes determining the most appropriate way of addressing barriers to involvement complex and controversial, raising ethical implications for the work of health researchers, PPI specialists and coordinators. Finally we make suggestions on how future research can enrich the concept of 'equality of opportunity' in PPI and improve practice. While our primary focus is on the NIHR, a strong advocate of PPI in research, this analysis will point to normative and ethical considerations that may be relevant to other research institutions and funding organisations aiming to promote equality of opportunity in their public and patient involvement strategies. [ABSTRACT FROM AUTHOR]

This study explores how qualitative health researchers navigate the demands of medical research ethics committees in Germany where qualitative research is subject to approval only when it is conducted in medical contexts. We present the results of a grounded theory study to investigate qualitative health researchers' experiences with procedural ethics and the strategies they adopt to navigate its demands. Our analysis revealed six dimensions of experience and three strategies adopted by researchers to navigate the demands of medical research ethics committees. All participants agreed that research ethics is of high importance in qualitative health research, but strategies to navigate the demands of medical research ethics committees ranged from avoiding, and adapting, to transforming the procedures of ethics review. Based on our findings, we provide recommendations for improving the ethics review of qualitative health research. [ABSTRACT FROM AUTHOR]

This study presents a novel approach to enhance cardiovascular disease prediction using a hybrid machine learning (ML) model. Leveraging on Synthetic Minority oversampling techniques (SMOTE) and adaptive boosting (AdaBoost), we integrate these methods with prominent classifiers, including Random Forest (RF), Extreme Gradient Boosting (XGBoost), and Extra Tree (ET). Focused on heart rate data as stress level indicators, our objective is to jointly predict cardiovascular disease, thereby addressing the global health challenge of early detection and accurate risk assessments. In response to class imbalance issues in cardiology databases, our hybrid model, which combines SMOTE and AdaBoost, demonstrates promising results. The inclusion of diverse classifiers, such as RF, XGBoost, and ET, enables the model to capture both linear and nonlinear relationships within the heart rate data, significantly enhancing the prediction accuracy. This powerful predictive tool empowers healthcare providers to identify individuals at a high risk for heart disease, thus facilitating timely interventions. This article underscores the pivotal role of ML and hybrid methodologies in advancing health research, particularly in cardiovascular disease prediction. By addressing the class imbalance and incorporating robust algorithms, our research contributes to the ongoing efforts to improve predictive modeling in healthcare. The findings presented here hold significance for medical practitioners and researchers striving for the early detection and prevention of cardiovascular diseases. [ABSTRACT FROM AUTHOR]

The recently released draft South African Ethics in Health Research Guidelines: Principles, Processes and Structures (Draft Guidelines) by the National Health Research Ethics Council recognize open data and provide guiding principles for this in the context of health research in South Africa. While its inclusion is a positive development, there is room for improvement. Although the Draft Guidelines leverage the Draft National Policy on Data and Cloud, it lacks incorporation of other relevant government policies, notably the Draft National Open Science Policy, and fails to sufficiently detail the principles of open science and open access. This limited scope and lack of comprehensive definition and detailed guidance present challenges for researchers in conducting ethical and responsible health research in South Africa. It constrains the Draft Guidelines from fully aligning with national imperatives and from fostering African-centric approaches. To address these issues, it is recommended that the Draft Guidelines integrate broader policies and principles, enhance clarity through comprehensive definitions, provide detailed guidance on open access, and promote African-centric approaches. Implementing these solutions will strengthen the Draft Guidelines, aligning them with national visions of open science, and thereby harnessing the full potential of South Africa's diverse scientific community in advancing health research. [ABSTRACT FROM AUTHOR]

The Universidade Júnior (U.Jr.) program, initiated by the University of Porto (U.Porto), Portugal, is a comprehensive educational initiative conducted during the summer months, primarily targeting the 10-18 age group. The program aims to promote science, technology, arts, humanities, and sports knowledge among elementary and secondary-level students and to influence their vocational choices and higher education aspirations. The study analyses the relationship between participation in the U.Jr. program and subsequent enrollment in higher education at U.Porto. It utilises data collected from 2006 to 2022, comparing U.Jr. participants with students who enrolled as freshmen at U.Porto. A Pearson correlation coefficient was applied to establish the connection between these datasets. Data analysis reveals a significant positive relationship between participation in U.Jr. and the choice of U.Porto for higher education. The study shows that 22 out of 100 first-year students at U.Porto in 2021 had previously attended U.Jr. Moreover, the geographical provenance of participants and U.Porto first-year students showed a robust correlation. The findings suggest that U.Jr. has a substantial impact on attracting students to U.Porto and influencing their academic choices. The program's diverse activities, coupled with its inclusive approach, have been instrumental in increasing the university's attractiveness and helping mitigate the country's low higher education rates. The study underscores the importance of such initiatives in shaping students' educational trajectories and choices for higher education. [ABSTRACT FROM AUTHOR]

Background: Studying global health problems requires international multidisciplinary teams. Such multidisciplinarity and multiculturalism create challenges in adhering to a set of ethical principles across different country contexts. Our group on health system responses to violence against women (VAW) included two universities in a European high-income country (HIC) and four universities in low-and middle-income countries (LMICs). This study aimed to investigate professional and policy perspectives on the types, causes of, and solutions to ethical challenges specific to the ethics approval stage of the global research projects on health system responses to VAW. Methods: We used the Network of Ethical Relationships model, framework method, and READ approach to analyse qualitative semi-structured interviews (n = 18) and policy documents (n = 27). In March-July 2021, we recruited a purposive sample of researchers and members of Research Ethics Committees (RECs) from the five partner countries. Interviewees signposted policies and guidelines on research ethics, including VAW. Results: We developed three themes with eight subthemes summarising ethical challenges across three contextual factors. The global nature of the group contributed towards power and resource imbalance between HIC and LMICs and differing RECs' rules. Location of the primary studies within health services highlighted differing rules between university RECs and health authorities. There were diverse conceptualisations of VAW and vulnerability of research participants between countries and limited methodological and topic expertise in some LMIC RECs. These factors threatened the timely delivery of studies and had a negative impact on researchers and their relationships with RECs and HIC funders. Most researchers felt frustrated and demotivated by the bureaucratised, uncoordinated, and lengthy approval process. Participants suggested redistributing power and resources between HICs and LMICs, involving LMIC representatives in developing funding agendas, better coordination between RECs and health authorities and capacity strengthening on ethics in VAW research. Conclusions: The process of ethics approval for global research on health system responses to VAW should be more coordinated across partners, with equal power distribution between HICs and LMICs, researchers and RECs. While some of these objectives can be achieved through education for RECs and researchers, the power imbalance and differing rules should be addressed at the institutional, national, and international levels. Three of the authors were also research participants, which had potential to introduce bias into the findings. However, rigorous reflexivity practices mitigated against this. This insider perspective was also a strength, as it allowed us to access and contribute to more nuanced understandings to enhance the credibility of the findings. It also helped to mitigate against unequal power dynamics. [ABSTRACT FROM AUTHOR]

Background: Partnerships between Higher Education Institutions (HEIs) in the global north and south have commonly been used as a vehicle to drive global health research and initiatives. Among these initiatives, include health system strengthening, research capacity building, and human resource training in developing countries. However, the partnership functioning of many global north-south partnerships still carry legacies of colonialism through unrecognized behavior patterns, attitudes, and belief systems in how they function. Even with research literature calling for a shift from equality to equity in the functioning of these partnerships, many still struggle with issues of complex and unspoken power dynamics. To understand the successes and challenges of north-south partnerships, this paper explored partnership development and functioning of a northern and multi-southern HEIs partnership focused on nutrition education and research. Methods: A qualitative research approach was used; data were collected through in-depth interviews (IDIs) with questions developed from the Bergen Model of Collective Functioning (BMCF). Thirteen IDIs were conducted with partners from all institutions including stakeholders. Findings: The partnership was built on the foundation of experiences and lessons of a previous partnership. Partners used these experiences and lessons to devise strategies to improve partnership inputs, communication, leadership, roles and structures, and maintenance and communication tasks. However, these strategies had an impact on partnership functioning giving rise to issues of inequitable power dynamics. The northern partner had two roles: one as an equal partner and another as distributor of project funds; this caused a conflict in roles for this partner. The partners distinguished themselves according to partner resources – two partners were named implementing partners and two named supportive partners. Roles and partner resources were the greatest contributors to power imbalances and caused delays in project activities. Conclusion: Using the BMCF to examine partnership dynamics illuminated that power imbalances caused a hierarchical stance in the partnership with northern partners having overall control and power of decision-making in the partnership. This could impact the effectiveness and sustainability of project in the southern institutions going forward. [ABSTRACT FROM AUTHOR]