BACKGROUND: The planning and management of health policy is directly linked to evidence-based research. To obtain the most rigorous results in research it is important to have a representative sample. However, ethnic minorities are often not accounted for in research. Migration, equality, and diversity issues are important priorities which need to be considered by researchers. The aim of this systematic review (SR) is to explore the literature examining the experiences of minority language users in Health and Social Care Research (HSCR).
METHODS: A SR of the literature was conducted. SPIDER framework and Cochrane principles were utilised to conduct the review. Five databases were searched, yielding 5311 papers initially. A SR protocol was developed and published in PROSPERO: https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42020225114analysis.
RESULTS: Following the title and abstract review by two reviewers, 74 papers were included, and a narrative account was provided. Six themes were identified: 1. Disparities in healthcare; 2. Maternal health; 3. Mental health; 4. Methodology in health research; 5. Migrant and minority healthcare; 6. Racial and ethnic gaps in healthcare. Results showed that language barriers (including language proficiency) and cultural barriers still exist in terms of recruitment, possibly effecting the validity of the results. Several papers acknowledged language barriers but did not act to reduce them.
CONCLUSIONS: Despite research highlighting cultures over the past 40 years, there is a need for this to be acknowledged and embedded in the research process. We propose that future research should include details of languages spoken so readers can understand the sample composition to be able to interpret the results in the best way, recognising the significance of culture and language. If language is not considered as a significant aspect of research, the findings of the research cannot be rigorous and therefore the validity is compromised.

This work presents the Fast Healthcare Interoperability Resources (FHIR®) specification of the NFDI4Health Metadata schema based on FHIR Version 4: We created 16 profiles to facilitate the integration of clinical, epidemiological, and public health study data. Despite challenges arising from the extensive MDS as well as missing concepts in semantic standards, it marks a significant advance in applying information technology standards to health research.

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.

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.

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.

BACKGROUND: 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.
RESULTS: 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.
CONCLUSIONS: 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.
UNASSIGNED: Members of ethnic minority Patient and Public Involvement and Engagement group and Community Advisory Board supported the REPRESENT study design, conceptualisation and report development.

This perspective article describes the experiences of engaging people with lived experience of dementia in research meetings and events from the perspectives of people with lived experience, researchers, trainees, audience members and others. We outline examples of engagement from different events and describe a video project, initiated by people with lived experience, conveying diverse views about becoming integral collaborators in the Canadian Consortium on Neurodegeneration in Aging (CCNA) annual Partners Forum and Science Days. We also report evaluation data from audiences and present a series of tips and strategies for facilitating this engagement, including practical considerations for supporting people with lived experience.

This article attempts to highlight the importance of including research sustainability as imperative when assessing human medical research in terms of ethical principles. Using a scoping review of recent literature, the complexity of research sustainability is highlighted with key themes and concepts surrounding this important topic being recognized and discussed. An overall paucity of guidance documents was identified and recommendations have been made to practically address this deficiency. An example of a research sustainability evaluation tool which is currently being piloted has been provided for possible adaptation and use by Ethics Committees and Institutional Review Boards to bolster the concept and inclusion of sustainability during the research approval process.

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.

OBJECTIVE: 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.
METHODS: 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.
RESULTS: 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.
CONCLUSIONS: 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.