Altmetric coverage of health research in Ireland 2017-2023: a protocol for a cross-sectional analysis.

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.

Reflecting on the use of Etuaptmumk/Two-Eyed seeing in a study examining hospital-based Indigenous wellness services in the Northwest Territories, Canada.

Etuaptmumk/Two-Eyed Seeing (E/TES) is a Mi'kmaw guiding principle that emphasises the importance of bringing together the strengths of Indigenous knowledges and Western knowledges to improve the world for future generations. Since its introduction to the academic community, E/TES has been taken up more frequently in Indigenous health research. However, as it is increasingly used, Elders and scholars have affirmed that it is at risk of being watered down or tokenised. This article reports on how E/TES was used in a community-engaged research study that examined hospital-based Indigenous wellness services in the Northwest Territories, Canada. As a living, relational, and spiritual principle, E/TES was used in the study in three interrelated ways. E/TES: (1) guided the study ontologically, shaping the research team's conceptualisation of knowledge and knowledge generation; (2) informed the research team's approach to relationship-building; and (3) guided reflexivity amongst team members. By reporting on how E/TES was used in the study, and critically reflecting on the strengths and challenges of the approach, this article seeks to contribute to growing scholarship about how E/TES is characterised and taken up in Indigenous health research.

Commentary: A road map for future data-driven urban planning and environmental health research.

Recent advances in data science and urban environmental health research utilise large-scale databases (100s-1000s of cities) to explore the complex interplay of urban characteristics such as city form and size, climate, mobility, exposure, and environmental health impacts. Cities are still hotspots of air pollution and noise, suffer urban heat island effects and lack of green space, which leads to disease and mortality burdens preventable with better knowledge. Better understanding through harmonising and analysing data in large numbers of cities is essential to identifying the most effective means of disease prevention and understanding context dependencies important for policy.

Exploring the evolution of research connectivity and funding in global neurosurgical publications.

BACKGROUND AND OBJECTIVES: There are critical disparities in the neurosurgical care provided around the globe due to challenges in resource allocation, training, and infrastructure. Global neurosurgical collaborations have replaced classical mission trips to address these disparities. However, the development of these collaborations and the impact of research funding on their growth has not yet been systematically studied. In this article, we use a graph theoretical approach to investigate trends in funding and co-authorship between and among authors from high-income countries (HICs) and authors from low- and middle-income countries (LMICs). METHODS: A bibliometric search of the global neurosurgical literature returned 307 articles between 1985 and 2020. A connectivity analysis was conducted to compute the number of co-authorships between HIC-HIC, LMIC-HIC, and LMIC-LMIC authors. The number of connections, summarized as either a global sum of connections or an average number of connections per manuscript, were analyzed in the context of time and funding through parametric statistical tests. RESULTS: An exponential increase in co-authorship collaboration was observed over time, especially after 2015. Notably, LMIC-LMIC collaborations appear to be rising at over twice the rate of other collaboration types. The presence of funding, in general, was associated with increased co-authorship of manuscripts by LMIC and HIC authors together (p = 0.033). A significant majority of the funding associated with LMIC-HIC co-authorships was supplied through charitable organizations and government grants (p = 0.034, p = 0.009, respectively). Most LMIC-LMIC co-authorships had no funding. CONCLUSION: This work shows significant and rapid growth in international neurosurgical partnerships, especially in HIC-LMIC and LMIC-LMIC collaborations. Also, a significant positive relationship exists between research funding and LMIC-HIC co-authorship trends. This work encourages us as a community to continue to expand our translational collaborations with LMIC neurosurgeons and establish funding mechanisms independent of HIC authors.

Through the Zoom window: How children use virtual technologies to navigate power dynamics in research.

Virtual technologies gained popularity during the COVID-19 pandemic for use in research, including research with children. As scholarship from the field of science, technology and society (STS) suggests, technologies are never neutral, but embedded with social values and, as such, used by people to navigate identities and relationships. Building on childhood studies research that has shown how children appropriate and use research tools, this article asks: How do child research participants use this virtual "window" into their homes and their lives? Using observations from a virtual and in-person study in the United States, we show how children used virtual technologies to manage relationships, filter what researchers saw of their lives, and navigate issues of privacy and self-disclosure. We conclude that analysing children's interactions with research technologies offers important indicators to guide researchers attending to ethical issues of power for both in-person and virtual research with children.

What Do We Know About Sharing Power in Co-Production in Mental Health Research? A Systematic Review and Thematic Synthesis.

BACKGROUND: Guidance on co-production between researchers and people with lived experience was published in 2018 by the National Institute for Health and Care Research (NIHR) advisory group, previously known as INVOLVE. This guidance described sharing power as a key principle within co-production. Authentic sharing of power within co-produced mental health research does not always occur however and remains a challenge to achieve within many projects. OBJECTIVES: To explore what has been learned about the sharing of power in co-production within mental health research since the publication of these guidelines, by synthesising qualitative literature relating to power within co-produced mental health research. METHODS: We carried out a systematic review with thematic synthesis. We searched CINHAL, Embase and PubMed databases to identify qualitative or mixed-method studies relating to power within co-produced mental health research. Studies were independently screened by two reviewers for inclusion and appraised using the Critical Appraisal Skills Programme tool (CASP) for qualitative research. RESULTS: We identified nine papers that met the criteria for inclusion and were included in the synthesis. Three themes were generated: (1) Battling to share power against a more powerful system, (2) Empowerment through relationships and (3) The journey is turbulent, but it is not supposed to be smooth. CONCLUSIONS: Results highlight that power is pervasive, especially within the hierarchical systems research is often conducted within. Sharing power within co-produced mental health research is an ongoing complex process that is not intended to be easy. Respectful trusting relationships can help facilitate power sharing. However, ultimately meaningful change needs to come from research funders, universities and NHS providers. PATIENT OR PUBLIC CONTRIBUTION: The study authors include a lived experience researcher who contributed to the review design, analysis and write-up.

Culturally Responsive Approaches to Health Research with Black Canadians: Challenges and Strategies.

INTRODUCTION: Canada's Black population has more than doubled over the last two decades, with the fastest growth occurring in the Prairie provinces of Manitoba, Saskatchewan, and Alberta. Despite a growing interest in Black health research in Canada, there is still limited knowledge on culturally responsive approaches to collecting, analyzing, and reporting health data on Black Canadians. This review presents a synthesis of challenges and strategies for conducting culturally responsive health research in Black communities. METHODS: Guided by Arksey and O'Malley's framework [1], this scoping review addresses the questions: What cultural considerations inform health data collection methods with Black Canadians on the Prairies? What gaps exist in current use of culturally appropriate approaches to health research with this population? We systematically searched selected electronic databases-Sociological Abstracts, PsychINFO, Embase, Social Science Citation Index, Social Services Abstract, Social Work Abstracts, CINAHL, Scopus, Medline, Cochrane Library, Proquest, and Web of Science-for studies on Black health in Manitoba, Saskatchewan, and Alberta. We completed a citation chaining of selected studies, searched thesis repositories, and consulted Black health researchers on the Prairies. Using our inclusion criteria, we screened 453 records and selected 27 articles for the review. RESULTS: Most of the included articles described research conducted in Alberta (77.7%) and between 2015 and 2022 (74.1%). We identified four themes relevant to culturally responsive approaches to Black health research: use of theory in research design; research leadership; research participation, uptake, and community engagement; and data collection procedures. CONCLUSIONS: Black leadership, critical representation on project teams, and partnerships with community gatekeepers can improve trust, acceptability, and research uptake. Cultural considerations in Black health research include attending to gender, age, and religion in data collection. There is also a need to reform research practices and guidelines to attend to the social, cultural, and religious needs of Black Canadians.

An evidence map on traditional medicine across health outcomes.

Background: Traditional medicine (TM) plays a significant role in healthcare either as part of the primary healthcare system or as an adjunct to conventional medicine. This study aimed to map systematic reviews (SRs) of TM modalities across health conditions and identify gaps in the research literature to facilitate priority setting in future TM research. Methods: We searched 17 databases from January 2018 to December 2022. Reviewers in pairs independently performed the database search, screened each record for inclusion, extracted data, and performed quality assessments using the AMSTAR 2 - A Measurement Tool to Assess systematic Reviews. To be included in this evidence map, the studies had to be SRs of clinical studies that evaluated the effectiveness of a TM modalities. The included SRs were analyzed according to TM modality, ICD-11 disease classification, and health outcomes, and visualized using graphical plots. Results: We retrieved 241,509 records. After excluding duplicate records, 181,616 titles and abstracts were screened and 20,856 records were selected for full-text assessment, of which 18,137 records were further excluded. The final 2719 included SRs were primarily in adults (2591) with only 128 SRs in the pediatric population. The most commonly evaluated health conditions were diseases of the digestive system, circulatory system, and genitourinary system, with herbal medicine (n = 1867) and acupuncture (n = 471) being the most investigated TM modalities in treating these illnesses. Based on AMSTAR 2 criteria, the methodology quality of the included SRs is considerably low. Conclusion: This evidence map provides a comprehensive overview of the extent and nature of the available research onTM modalities across health conditions. It provides an initial step towards characterizing the global evidence base and outlining gaps in the existing evidence. We regard this study as laying the basis for future research of TM modalities. Registration: The protocol of this map is registered in PROSPERO (CRD42023416355).

Exploring Trust in Research Among Black American Men at a Health Promotion Symposium in Rural North Carolina.

Despite efforts to diversify research and health programs, Black American men remain a "hard-to-reach" population while collectively suffering from some of the worst health outcomes in the United States. Faith- and community-based approaches have shown potential to engage Black Americans in health promotion and health research activities. The purpose of this article is to examine health research participation and trust in research among a sample of Black American men in rural North Carolina who attended a community-based health symposium, culturally tailored for Black American men (n = 112). A cross-sectional survey was administered among men to learn about health status, health concerns, and perception of health research. Among 106 men who completed the survey, most reported no prior participation in health research (68.87%), but almost a third of men reported interest in participating in health research. No significant differences in trust in research was found based on interest in research participation (interested in research participation, not interested in research participation, no response), presenting an opportunity to increase the trustworthiness of medical institutions and build relationships with this population. These findings will inform future research and health programming for Black American men in rural locations.

Characterization of clinical trials in Ecuador and their association with disease burden: Are there research gaps?

This study offers a detailed analysis of clinical trials conducted in Ecuador from 2010 to 2022 to assess alignment with the country's disease burden as indicated by the Global Burden of Disease study. Utilizing data from five registries, including ARCSA and Clinicaltrials.gov, we analyzed characteristics and coverage of 75 CTs after removing duplicates and ineligible studies. Findings reveal a 50% research gap across disease groups, with neoplasms being the only category matching disease burden. The scarcity of clinical research highlights the disparity between CTs and prevalent diseases such as cardiovascular and kidney diseases, diabetes, and other non-communicable conditions. Our results underscore the urgent need for increased clinical research investment addressing these critical health challenges in Ecuador.

PHYSICAL ACTIVITY RESEARCH: ANALYSIS OF THE AGENDA FUNDED BY THE MINISTRY OF HEALTH / INVESTIGACIÓN DE ACTIVIDAD FÍSICA: ANÁLISIS DE LA AGENDA FINANCIADA POR EL MINISTERIO DE SALUD / PESQUISAS EM ATIVIDADE FÍSICA: ANÁLISE DA AGENDA FINANCIADA PELO MINISTÉRIO DA SAÚDE

Introduction: Physical activity (PA) is one of the strategic agendas in the public health agenda and in Brazil it is established as a right of the population. The Ministry of Health funds research guided by the National Agenda of Health Research Priorities (ANPPS), so the ANPPS can bring PA research closer to the policies of the Unified Health System (SUS). The study aimed to analyze a) the temporal evolution of the number, total value and value per survey; b) the axles; c) the sub-agendas of the ANPPS. Methods: This is a descriptive, quantitative, study of PA research funded by the Ministry of Health between 2002 and 2023, carried out by consulting the public repository "Pesquisa Saúde". The temporal trend analysis of the number, total deflated value and deflated value was performed per survey. The absolute and relative values of the number and total value were analyzed using descriptive statistics. Results: A total of 234 PA research were funded, and the total deflated amount was approximately R$ 60.0 million, which corresponds to an average investment of R$ 256.5 thousand per research. This amount represents 3.2% and 1.7%, respectively, of the quantity and of the total deflated value for health research. Important fluctuations in the number and funding were revealed, with a decreasing trend for the number, total value and value per survey in the period analyzed. The health consequences axis was the one that received the largest number of research and financial resources. The sub-agenda with the highest number of studies was chronic non-communicable diseases and the one that received the largest amount of resources was epidemiology. Conclusion: PA was present in research funded by the Ministry of Health, but it is necessary to advance, especially in increasing the amount of resources and inducing specific funding for the policy axis, aiming to expand the production of knowledge about PA as a public health policy.

Introducción: La actividad física (AF) es una de las cuestiones estratégicas en la agenda de la salud pública y en Brasil está establecida como un derecho de la población. El Ministerio de Salud financia investigaciones orientadas por la Agenda Nacional de Prioridades de Investigación en Salud (ANPPS), por lo tanto, la ANPPS puede acercar las investigaciones en AF a las políticas del Sistema Único de Salud (SUS). El estudio tuvo como objetivos analizar: a) la evolución temporal del número, del valor total y valor por investigación; b) los ejes; c) las subagendas de la ANPPS. Métodos: Se trata de un estudio descriptivo, cuantitativo, de las investigaciones en AF financiadas por el Ministerio de Salud en el período entre 2002 y 2023, realizado a través de una consulta en el repositorio público "Pesquisa Saúde". Se realizó un análisis de tendencia temporal del número, valor total deflacionado y valor deflacionado por investigación. Los valores absolutos y relativos del número y valor total fueron analizados mediante estadística descriptiva. Resultados:Se financiaron 234 investigaciones en AF y el valor total deflacionado fue de aproximadamente R$ 60,0 millones, lo que corresponde a una inversión promedio de R$ 256,5 mil por investigación. Este cuantitativo representa respectivamente el 3,2% y el 1,7% del cuantitativo y del valor total deflacionado para investigaciones en salud. Se revelaron importantes oscilaciones en el número y en la financiación, con tendencia decreciente para el número, valor total y valor por investigación en el período analizado. El eje de consecuencias para la salud fue el que recibió el mayor número de investigaciones y de recursos financieros. La subagenda con mayor número de investigaciones fue la de enfermedades crónicas no transmisibles y la que recibió el mayor monto de recursos fue la de epidemiología. Conclusión: La AF estuvo presente en las investigaciones financiadas por el Ministerio de Salud, sin embargo, es necesario avanzar, principalmente en el aumento del monto de recursos y en la inducción de la promoción específica para el eje de políticas, con el objetivo de ampliar la producción de conocimiento sobre AF como política pública de salud.

Introdução: A atividade física (AF) é uma das pautas estratégicas na agenda da saúde pública e no Brasil é estabelecida enquanto um direito da população. O Ministério da Saúde financia pesquisas orientadas pela Agenda Nacional de Prioridades de Pesquisa em Saúde (ANPPS), portanto, a ANPPS pode aproximar as pesquisas em AF das políticas do Sistema Único de Saúde (SUS). O estudo teve como objetivos analisar: a) a evolução temporal do número, do valor total e valor por pesquisa; b) os eixos; c) as subagendas da ANPPS. Métodos: Trata-se de um estudo descritivo, quantitativo, das pesquisas em AF financiadas pelo Ministério da Saúde no período entre 2002 e 2023, realizado por meio de consulta no repositório público "Pesquisa Saúde". Foi realizada a análise de tendência temporal do número, valor total deflacionado e valor deflacionado por pesquisa. Os valores absolutos e relativos do número e valor total foram analisados por meio de estatística descritiva. Resultados: Foram financiadas 234 pesquisas em AF e o valor total deflacionado foi de aproximadamente R$ 60,0 milhões, o que corresponde a um investimento médio de R$ 256,5 mil por pesquisa. Esse quantitativo representa respectivamente 3,2% e 1,7% do quantitativo e do valor total deflacionado para pesquisas em saúde. Foram reveladas importantes oscilações no número e no financiamento, com tendência decrescente para o número, valor total e valor por pesquisa no período analisado. O eixo de consequências para a saúde foi o que recebeu o maior número de pesquisas e de recursos financeiros. A subagenda com maior número de pesquisas foi a de doenças crônicas não transmissíveis e a que recebeu o maior montante de recursos foi a de epidemiologia. Conclusão: A AF esteve presente nas pesquisas financiadas pelo Ministério da Saúde, contudo é necessário avançar, principalmente no aumento do montante de recursos e na indução do fomento específico para o eixo de políticas, visando ampliar a produção do conhecimento sobre AF enquanto política pública de saúde.

Health and social care experience and research perception of different ethnic minority populations in the East Midlands, United Kingdom (REPRESENT study).

INTRODUCTION: Ethnic minority populations experience significant health and social care disparities; despite experiencing a greater burden of diseases, these groups are underrepresented in health and social care research. Consequently, related research can be less applicable to these population groups. The REPRESENT study aims to explore the health and social care experiences of ethnic minorities and other minoritised populations, their research interests and appropriate research practices. METHODS: Focus groups and semistructured interviews were conducted between May and September 2022 with members of a number of ethnic minority communities in England. Data were audio recorded, transcribed and thematically coded using NVivo 12. Rigour was determined through extensive sampling, iterative data collection and analysis. FINDINGS: Fifty-two ethnic minority members were engaged in group interviews and one-to-one interviews. Participants included representatives of the following groups: African Caribbean, Eastern European, Gypsy Travellers, Lesbian, Gay, Bisexual, Transgender, Queer, Intersex and Asexual+, Refugee/Asylum Seekers, Somali and South Asian communities. Interviews were also conducted with ethnic minority healthcare providers and researchers. Three overarching categories were identified: health information, medical service experiences, health and social care concerns and health research. Health and social care services challenges were mostly attributed to discrimination, delayed services, poor cultural relevance and language and cultural barriers. The most influential information sources were local community organisations and word-of-mouth. The main health and social care concerns were chronic long-term health conditions, mental health, maternal health and child development. Recommendations for research involved understanding the motivations for participation, improving communication and empowering communities. Top research priorities were long-term health conditions, health promotion and education, early care interventions and understanding community needs. INTERPRETATION: Discrimination and bias in health and social care provision have severe implications for worsening ethnic health inequalities. Healthcare commissioning authorities and policymakers can leverage the preference of ethnic minority groups for pharmacy services and community organisations to improve access to care. Improving research interest and engagement requires understanding individual community needs, community sensitivity, research relevance and cultural appropriateness. PATIENT OR PUBLIC CONTRIBUTION: Members of ethnic minority Patient and Public Involvement and Engagement group and Community Advisory Board supported the REPRESENT study design, conceptualisation and report development.

An umbrella review of reviews on challenges to meaningful adolescent involvement in health research.

BACKGROUND: Less than 1% of studies on child and adolescent health report the involvement of adolescents in health research. This is attributed to barriers experienced by researchers and adolescents in the engagement process. To address this under-involvement of adolescents, we first need a better understanding of the factors that hinder adolescent involvement in health research. OBJECTIVE: We conducted an umbrella review of reviews to consolidate the review-level evidence on the barriers to meaningful involvement of adolescents in health research. METHODS: We preregistered this umbrella review of reviews with PROSPERO (CRD42021287467). We searched 11 databases; Google Scholar; and PROSPERO; supplemented by a hand search of the reference lists of eligible reviews, relevant journals, websites of 472 organisations, and input from experts. This resulted in the inclusion of 99 review articles exploring adolescent involvement in studies on adolescent physical or mental health, which were narratively synthesised. Adolescent coresearchers were engaged at all stages of the review. RESULTS: We found that adolescent involvement in health research is impeded by several challenges experienced by researchers and adolescents. Some challenges experienced by researchers were organisational issues which included limited resources, gatekeeping and paying adolescents. Some barriers were related to a lack of preparedness among researchers and included a lack of awareness of adolescent involvement, the need for training and guidance, and negative attitudes towards participatory research. There were also barriers around how adolescents can be involved, such as researchers finding it challenging to adapt to new methods, issues with recruitment and retention of adolescents, inclusiveness and accessibility. There were also challenges specific to adolescents, such as adolescents' skills and expertise, training, motivations and study goals. Finally, barriers related to the ethical involvement of adolescents included issues with power dynamics, confidentiality, safety and protection of adolescents. Some of the barriers reported by adolescents included tokenistic involvement, inaccessibility of adolescent involvement, and their competing demands. CONCLUSION: Researchers may find this review useful in understanding and planning for potential challenges of involving adolescents in research. Despite many identified barriers to adolescent engagement, few mitigation strategies were identified to address these barriers. There is a clear need to establish best practices for meaningful adolescent involvement in health research. PUBLIC AND PATIENT INVOLVEMENT IN THE REVIEW: Adolescents were involved at multiple stages of this umbrella review of reviews. They reviewed the protocol, screened 25% of the articles at title and abstract screening stage, screened 10% of full-text articles, and worked on data analysis. They also helped plan and conduct a participatory workshop with an adolescent advisory group to discuss the challenges experienced by adolescents in health research.

Ethical, Legal, and Practical Concerns Surrounding the Implemention of New Forms of Consent for Health Data Research: Qualitative Interview Study.

BACKGROUND: In Europe, within the scope of the General Data Protection Regulation, more and more digital infrastructures are created to allow for large-scale access to patients' health data and their use for research. When the research is performed on the basis of patient consent, traditional study-specific consent appears too cumbersome for many researchers. Alternative models of consent are currently being discussed and introduced in different contexts. OBJECTIVE: This study explores stakeholder perspectives on ethical, legal, and practical concerns regarding models of consent for health data research at German university medical centers. METHODS: Semistructured focus group interviews were conducted with medical researchers at German university medical centers, health IT specialists, data protection officers, and patient representatives. The interviews were analyzed using a software-supported structuring qualitative content analysis. RESULTS: Stakeholders regarded broad consent to be only marginally less laborious to implement and manage than tiered consent. Patient representatives favored specific consent, with tiered consent as a possible alternative. All stakeholders lamented that information material was difficult to understand. Oral information and videos were mentioned as a means of improvement. Patient representatives doubted that researchers had a sufficient degree of data security expertise to act as sole information providers. They were afraid of undue pressure if obtaining health data research consent were part of medical appointments. IT specialists and other stakeholders regarded the withdrawal of consent to be a major challenge and called for digital consent management solutions. On the one hand, the transfer of health data to non-European countries and for-profit organizations is seen as a necessity for research. On the other hand, there are data security concerns with regard to these actors. Research without consent is legally possible under certain conditions but deemed problematic by all stakeholder groups, albeit for differing reasons and to different degrees. CONCLUSIONS: More efforts should be made to determine which options of choice should be included in health data research consent. Digital tools could improve patient information and facilitate consent management. A unified and strict regulation for research without consent is required at the national and European Union level. Obtaining consent for health data research should be independent of medical appointments, and additional personnel should be trained in data security to provide information on health data research.

Development, implementation, and scalability of the Family Engagement in Research Course: a novel online course for family partners and researchers in neurodevelopmental disability and child health.

BACKGROUND: Since 2011 when the Canadian Institutes of Health Research launched the Strategy for Patient Oriented Research, there has been a growing expectation to embed patient-oriented research (POR) in the health research community in Canada. To meet this expectation and build capacity for POR in the field of neurodevelopmental disability and child health, in 2017 researchers and family leaders at CanChild Centre for Childhood Disability Research, McMaster University partnered with Kids Brain Health Network and McMaster Continuing Education to develop and implement a 10-week online Family Engagement in Research (FER) Course. MAIN TEXT: From its inception, the FER Course has been delivered in partnership with family leaders and researchers. The FER Course is innovative in its co-learning and community building approach. The course is designed to bring family partners and researchers together to co-learn and connect, and to develop competency and confidence in both the theory and practice of family engagement in research. Coursework involves four live online group discussions, individual review of course materials, weekly group activities, and a final group project and presentation. Upon completion of the FER Course, graduates earn a McMaster University micro-credential. CONCLUSIONS: To meet a need in building capacity in POR, a novel course in the field of neurodevelopmental disability and child health has been co-created and delivered. Over six years (2018-2023), the FER Course has trained more than 430 researchers and family partners across 20 countries. A unique outcome of the FER Course is that graduates expressed the wish to stay connected and continue to collaborate well beyond the course in turn creating an international FER Community Network that continues to evolve based on need. The FER Course is creating a growing international community of researchers, trainees, self-advocates, and family partners who are championing the implementation of meaningful engagement in neurodevelopmental disability and child health research and beyond. The course is internationally recognized with an established record of building capacity in POR. Its uptake, sustainability, and scalability to date has illustrated that training programs like the FER Course are necessary for building capacity and leadership in family engagement in research.

In the last two decades there has been a clear commitment in Canada (and the world) to include patients and their families in health research­a process called patient-oriented research or as we refer to it­family engagement in research. In 2011, the Canadian Institutes of Health Research introduced the Strategy for Patient-Oriented Research to make this happen. To support POR in neurodevelopmental disability and child health, CanChild Centre for Childhood Disability Research teamed up with Kids Brain Health Network and McMaster Continuing Education. Together, a team of family caregivers and researchers co-created the Family Engagement in Research (FER) Course, a 10-week online course.The purpose of the FER Course is for researchers and family partners to learn about family engagement principles and how to use them in research. The course covers core areas in family engagement including how to find each other, how families and researchers can work together, and ways to overcome common challenges in research partnerships. The course uses online group sessions, discussion boards, and various resources such as research papers and videos. Through a group project, family partners and researchers collaborate to create a resource on family engagement. Completing the FER Course researchers and family members earn a McMaster University micro-credential and become part of a growing global community of FER Course graduates.Over six years (2018­2023), the FER Course has trained more than 430 researchers and family partners from 20 countries. The course has strengthened capacity in family engagement and is building a worldwide community of researchers, trainees, self-advocates, and family partners who are dedicated to improving neurodevelopmental disability and child health research through meaningful engagement.

Integrating gender analysis into research: reflections from the Gender-Net Plus workshop.

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.

Normalising participatory health research approaches in the WHO European region for refugee and migrant health: a paradigm shift.

While people's involvement in health research is increasingly the encouraged norm in many countries, the involvement of refugees and migrants in research about their health is rare. Here, we call for a paradigm shift in the field of refugee and migrant health to make participatory health research routine, i.e. normalised. To disrupt 'business as usual', we synthesise evidence about meaningful research partnerships and features of inclusive participatory spaces. We present examples of decolonial, culturally attuned methods that can be used to reimagine and reinvigorate research practice because they encourage critical reflexivity and power-sharing: arts-based research using music and singing, participatory learning and action research, Photovoice and co-design (ideas generation) workshops. We consider the consequences of not making this paradigm shift. We conclude with recommendations for specific structural and policy changes and empirical research questions that are needed to inform the normalisation of participatory health research in this field.

Factors Influencing Interest and Engagement in Biomedical Research Among Community Medicine Residents in India: A Descriptive Cross-Sectional Study.

Introduction Medical science must be based on sound and scientific evidence and requires continuous research. Engaging in research allows students and faculty to explore new frontiers, question existing paradigms, and discover innovative solutions to medical challenges. As a specialty, community medicine plays a pivotal role in addressing public health issues. However, the engagement of community medicine residents in biomedical research remains suboptimal, which may impede the generation of evidence-based practices tailored to the Indian context. This study was conducted to find the interest and engagement of community medicine residents, and factors influencing their interest in biomedical research. Methods An online survey was conducted among community medicine residents of Uttar Pradesh, from February to April 2024, using Google Forms having a semi-structured, pretested questionnaire. Results One hundred and ninety-six residents participated in the study, where females (52.6%; 103/196) outnumbered males (47.4%; 93/196). The majority of participants were third-year residents (40.8%). Most participants seemed interested in biomedical research (83.2%) and thought that Basic Course in Biomedical Research (BCBR) helps conduct research projects (75%). Around half had previous experience in research projects, with cross-sectional studies being the most common (75.9%) study design. Enhancing research skills and a desire to contribute to medical knowledge emerged as primary motivators. On the other hand, the lack of time due to being overburdened with academic and educational activities was seen as the most common barrier to conducting research. Conclusions The majority of participants were found interested in research activities. The opportunity to improve research skills, desire to serve the medical fraternity, and a positive impact on resumes were the leading motivating factors for conducting research. Difficulty in sparing time, little knowledge, and poor support from mentors were found as important barriers.