Reporting of equity in observational epidemiology: A methodological review.

Background: Observational studies can inform how we understand and address persisting health inequities through the collection, reporting and analysis of health equity factors. However, the extent to which the analysis and reporting of equity-relevant aspects in observational research are generally unknown. Thus, we aimed to systematically evaluate how equity-relevant observational studies reported equity considerations in the study design and analyses. Methods: We searched MEDLINE for health equity-relevant observational studies from January 2020 to March 2022, resulting in 16 828 articles. We randomly selected 320 studies, ensuring a balance in focus on populations experiencing inequities, country income settings, and coronavirus disease 2019 (COVID-19) topic. We extracted information on study design and analysis methods. Results: The bulk of the studies were conducted in North America (n = 95, 30%), followed by Europe and Central Asia (n = 55, 17%). Half of the studies (n = 171, 53%) addressed general health and well-being, while 49 (15%) focused on mental health conditions. Two-thirds of the studies (n = 220, 69%) were cross-sectional. Eight (3%) engaged with populations experiencing inequities, while 22 (29%) adapted recruitment methods to reach these populations. Further, 67 studies (21%) examined interaction effects primarily related to race or ethnicity (48%). Two-thirds of the studies (72%) adjusted for characteristics associated with inequities, and 18 studies (6%) used flow diagrams to depict how populations experiencing inequities progressed throughout the studies. Conclusions: Despite over 80% of the equity-focused observational studies providing a rationale for a focus on health equity, reporting of study design features relevant to health equity ranged from 0-95%, with over half of the items reported by less than one-quarter of studies. This methodological study is a baseline assessment to inform the development of an equity-focussed reporting guideline for observational studies as an extension of the well-known Strengthening Reporting of Observational Studies in Epidemiology (STROBE) guideline.

Motivations for investigating health inequities in observational epidemiology: a content analysis of 320 studies.

OBJECTIVES: To enhance equity in clinical and epidemiological research, it is crucial to understand researcher motivations for conducting equity-relevant studies. Therefore, we evaluated author motivations in a randomly selected sample of equity-relevant observational studies published during the COVID-19 pandemic. STUDY DESIGN AND SETTING: We searched MEDLINE for studies from 2020 to 2022, resulting in 16,828 references. We randomly selected 320 studies purposefully sampled across income setting (high vs low-middle-income), COVID-19 topic (vs non-COVID-19), and focus on populations experiencing inequities. Of those, 206 explicitly mentioned motivations which we analyzed thematically. We used discourse analysis to investigate the reasons behind emerging motivations. RESULTS: We identified the following motivations: (1) examining health disparities, (2) tackling social determinants to improve access, and (3) addressing knowledge gaps in health equity. Discourse analysis showed motivations stem from commitments to social justice and recognizing the importance of highlighting it in research. Other discourses included aspiring to improve health-care efficiency, wanting to understand cause-effect relationships, and seeking to contribute to an equitable evidence base. CONCLUSION: Understanding researchers' motivations for assessing health equity can aid in developing guidance that tailors to their needs. We will consider these motivations in developing and sharing equity guidance to better meet researchers' needs.

Randomized controlled trial demonstrates novel tools to assess patient outcomes of Indigenous cultural safety training.

BACKGROUND: Health care routinely fails Indigenous peoples and anti-Indigenous racism is common in clinical encounters. Clinical training programs aimed to enhance Indigenous cultural safety (ICS) rely on learner reported impact assessment even though clinician self-assessment is poorly correlated with observational or patient outcome reporting. We aimed to compare the clinical impacts of intensive and brief ICS training to control, and to assess the feasibility of ICS training evaluation tools, including unannounced Indigenous standardized patient (UISP) visits. METHOD: Using a prospective parallel group three-arm randomized controlled trial design and masked standardized patients, we compared the clinical impacts of the intensive interactive, professionally facilitated, 8- to10-h Sanyas ICS training; a brief 1-h anti-bias training adapted to address anti-Indigenous bias; and control continuing medical education time-attention matched to the intensive training. Participants included 58 non-Indigenous staff physicians, resident physicians and nurse practitioners from family practice clinics, and one emergency department across four teaching hospitals in Toronto, Canada. Main outcome measures were the quality of care provided during UISP visits including adjusted odds that clinician would be recommended by the UISP to a friend or family member; mean item scores on patient experience of care measure; and clinical practice guideline adherence for NSAID renewal and pain assessment. RESULTS: Clinicians in the intensive or brief ICS groups had higher adjusted odds of being highly recommended to friends and family by standardized patients (OR 6.88, 95% CI 1.17 to 40.45 and OR 7.78, 95% CI 1.05 to 58.03, respectively). Adjusted mean item patient experience scores were 46% (95% CI 12% to 80%) and 40% (95% CI 2% to 78%) higher for clinicians enrolled in the intensive and brief training programs, respectively, compared to control. Small sample size precluded detection of training impacts on clinical practice guideline adherence; 100% of UISP visits were undetected by participating clinicians. CONCLUSIONS: Patient-oriented evaluation design and tools including UISPs were demonstrated as feasible and effective. Results show potential impact of cultural safety training on patient recommendation of clinician and improved patient experience. A larger trial to further ascertain impact on clinical practice is needed. TRIAL REGISTRATION: Clinicaltrials.org NCT05890144. Retrospectively registered on June 5, 2023.

CONNECTing Concussion Care with Research Across Ontario.

Common data elements (CDEs) for concussion, as established by international bodies, are not being widely used in Ontario, resulting in significant variability in the data being assessed and collected across clinics. CDEs support standardization of care as well as large-scale data sharing for high impact research. A collaborative network - Concussion Ontario Network: Neuroinformatics to Enhance Clinical care and Translation (CONNECT) - comprised of health care professionals, researchers, members from advocacy groups, and patients was formed to establish and implement CDEs for concussion care and research. While the seeds have been planted and initial effectiveness demonstrated, future challenges exist.

Defining quality of preventive oral health services in a northern First Nations community: a concept mapping study.

INTRODUCTION: In partnership with the Norway House Cree Nation (NHCN) in Manitoba, Canada, this study developed a framework based on how Indigenous parents/caregivers of young children and community-based oral health decision-makers perceive 'quality of preventive oral health services'. METHODS: Concept mapping was used to develop the 'quality of preventive oral health services' framework. This involved brainstorming/idea generation, sorting and rating, visual representation, and interpretation sessions with parents/caregivers (CG) and decision-makers (DM) in Norway House, Manitoba. Using the Concept System's GlobalMax software, a conceptual framework was created that was modified from input from CG and DM groups, which can be visualized through the concept map. RESULTS: The final concept map revealed seven domains of quality preventive oral health services: dental staff character and skills, working with community, responsibilities in preventive education, inclusive preventive oral health strategies, accessibility to appointments, logistics of providing services, and dental environment. CONCLUSION: This study provides insight into the existing gap in oral health services for Indigenous populations. Based on conversations and the concept mapping process, the developed framework can inform the steps to be taken to improve preventive oral health services for Indigenous peoples. The framework has been used to develop a quantitative scale to inform sustainable and impactful change in the quality of preventive oral health services that are meaningful to Indigenous peoples.

Systematic review of Indigenous cultural safety training interventions for healthcare professionals in Australia, Canada, New Zealand and the United States.

OBJECTIVE: To synthesise and appraise the design and impact of peer-reviewed evaluations of Indigenous cultural safety training programmes and workshops for healthcare workers in Australia, Canada, New Zealand and/or the United States. DESIGN: Systematic review. DATA SOURCES: Ovid Medline, Embase, PsycINFO, CINAHL, Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews, Bibliography of Indigenous Peoples in North America, Applied Social Sciences Index & Abstracts, ERIC (Education Resources Information Center), International Bibliography of the Social Sciences, ProQuest Dissertations & Theses Global, Sociological Abstracts, and Web of Science's Social Sciences Citation Index and Science Citation Index from 1 January 2006 to 12 May 2022. ELIGIBILITY CRITERIA: Studies that evaluated the outcomes of educational interventions for selecting studies: designed to improve cultural safety, cultural competency and/or cultural awareness for non-Indigenous adult healthcare professionals in Canada, Australia, New Zealand or the United States. DATA EXTRACTION AND SYNTHESIS: Our team of Indigenous and allied scientists tailored existing data extraction and quality appraisal tools with input from Indigenous health service partners. We synthesised the results using an iterative narrative approach. RESULTS: 2442 unique titles and abstracts met screening criteria. 13 full texts met full inclusion and quality appraisal criteria. Study designs, intervention characteristics and outcome measures were heterogeneous. Nine studies used mixed methods, two used qualitative methods and two used quantitative methods. Training participants included nurses, family practice residents, specialised practitioners and providers serving specific subpopulations. Theoretical frameworks and pedagogical approaches varied across programmes, which contained overlapping course content. Study outcomes were primarily learner oriented and focused on self-reported changes in knowledge, awareness, beliefs, attitudes and/or the confidence and skills to provide care for Indigenous peoples. The involvement of local Indigenous communities in the development, implementation and evaluation of the interventions was limited. CONCLUSION: There is limited evidence regarding the effectiveness of specific content and approaches to cultural safety training on improving non-Indigenous health professionals' knowledge of and skills to deliver quality, non-discriminatory care to Indigenous patients. Future research is needed that advances the methodological rigour of training evaluations, is focused on observed clinical outcomes, and is better aligned to local, regional,and/or national Indigenous priorities and needs.

A scoping review establishes need for consensus guidance on reporting health equity in observational studies.

OBJECTIVES: To evaluate the support from the available guidance on reporting of health equity in research for our candidate items and to identify additional items for the Strengthening Reporting of Observational studies in Epidemiology-Equity extension. STUDY DESIGN AND SETTING: We conducted a scoping review by searching Embase, MEDLINE, CINAHL, Cochrane Methodology Register, LILACS, and Caribbean Center on Health Sciences Information up to January 2022. We also searched reference lists and gray literature for additional resources. We included guidance and assessments (hereafter termed "resources") related to conduct and/or reporting for any type of health research with or about people experiencing health inequity. RESULTS: We included 34 resources, which supported one or more candidate items or contributed to new items about health equity reporting in observational research. Each candidate item was supported by a median of six (range: 1-15) resources. In addition, 12 resources suggested 13 new items, such as "report the background of investigators". CONCLUSION: Existing resources for reporting health equity in observational studies aligned with our interim checklist of candidate items. We also identified additional items that will be considered in the development of a consensus-based and evidence-based guideline for reporting health equity in observational studies.

Improving social justice in observational studies: protocol for the development of a global and Indigenous STROBE-equity reporting guideline.

BACKGROUND: Addressing persistent and pervasive health inequities is a global moral imperative, which has been highlighted and magnified by the societal and health impacts of the COVID-19 pandemic. Observational studies can aid our understanding of the impact of health and structural oppression based on the intersection of gender, race, ethnicity, age and other factors, as they frequently collect this data. However, the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) guideline, does not provide guidance related to reporting of health equity. The goal of this project is to develop a STROBE-Equity reporting guideline extension. METHODS: We assembled a diverse team across multiple domains, including gender, age, ethnicity, Indigenous background, disciplines, geographies, lived experience of health inequity and decision-making organizations. Using an inclusive, integrated knowledge translation approach, we will implement a five-phase plan which will include: (1) assessing the reporting of health equity in published observational studies, (2) seeking wide international feedback on items to improve reporting of health equity, (3) establishing consensus amongst knowledge users and researchers, (4) evaluating in partnership with Indigenous contributors the relevance to Indigenous peoples who have globally experienced the oppressive legacy of colonization, and (5) widely disseminating and seeking endorsement from relevant knowledge users. We will seek input from external collaborators using social media, mailing lists and other communication channels. DISCUSSION: Achieving global imperatives such as the Sustainable Development Goals (e.g., SDG 10 Reduced inequalities, SDG 3 Good health and wellbeing) requires advancing health equity in research. The implementation of the STROBE-Equity guidelines will enable a better awareness and understanding of health inequities through better reporting. We will broadly disseminate the reporting guideline with tools to enable adoption and use by journal editors, authors, and funding agencies, using diverse strategies tailored to specific audiences.

Ethical publishing in 'Indigenous' contexts.

Ethical publishing practices are vital to tobacco control research practice, particularly research involving Indigenous (Indigenous peoples: For the purposes of this Special Communication, we use the term Indigenous people(s) to include self-identified individuals and communities who frequently have historical continuity with precolonial/presettler societies; are strongly linked to the land on which they or their societies reside; and often maintain their own distinct language(s), belief and social-political systems, economies and sciences. The authors humbly acknowledge, respect and value that Indigenous peoples are diverse and constitute many nations, cultures and language groups. Many Indigenous peoples also exist as governments in treaty relations with settler-colonial societies, and all Indigenous peoples have inherent rights under international law. The language and terminology used should reflect the local context(s) and could include, but are not limited to, terms such as Aboriginal, Bagumani, Cherokee, First Peoples, First Nations, Inuit, Iwaidja, Kungarakan, Lakota, Maori, Mѐtis, American Indian, Navajo, Wagadagam, Wiradjuri, Yurok, etc) people. These practices can minimise, correct and address biases that tend to privilege Euro-Western perspectives. Ethical publishing practices can minimise and address harms, such as appropriation and misuse of knowledges; strengthen mechanisms of accountability to Indigenous peoples and communities; ensure that tobacco control research is beneficial and meaningful to Indigenous peoples and communities; and support Indigenous agency, sovereignty and self-determination. To ensure ethical practice in tobacco control, the research methodology and methods must incorporate tangible mechanisms to include and engage those Indigenous peoples that the research concerns, affects and impacts.Tobacco Control is currently missing an ethical research and evaluation publishing protocol to help uphold ethical practice. The supporters of this Special Communication call on Tobacco Control to adopt publication practice that explicitly upholds ethical research and evaluation practices, particularly in Indigenous contexts. We encourage researchers, editors, peer reviewers, funding bodies and those publishing in Tobacco Control to reflect on their conduct and decision-making when working, developing and undertaking research and evaluation of relevance to Indigenous peoples.Tobacco Control and other publishers, funding bodies, institutions and research teams have a fundamental role in ensuring that the right peoples are doing the right work in the right way. We call for Tobacco Control to recognise, value and support ethical principles, processes and practices that underpin high-quality, culturally safe and priority-driven research, evaluation and science that will move us to a future that is commercial tobacco and nicotine free.

Developing Data Governance Agreements with Indigenous Communities in Canada: Toward Equitable Tuberculosis Programming, Research, and Reconciliation.

Indigenous rights to self-determination and data sovereignty support Indigenous-led data governance, which, when adequately resourced, can act as a catalyst for Indigenous-led strategic planning and decision-making in public health research and programming. Respecting Indigenous data sovereignty and governance requires time, resources, education, and planning. Here we share our experiences and lessons learned when developing and implementing data governance agreements with select First Nations and Métis partnering communities in Canada in the context of tuberculosis prevention and care. We define the process undertaken to create a decision space, supported by data governance agreements, where researchers, program (government) stakeholders, and Indigenous community partners are equally and equitably informed to co-develop public health interventions. The decision space has implications for tackling all manner of public health concerns and can inform policy for nation-to-nation public health relationships to advance public health goals.

Guidance relevant to the reporting of health equity in observational research: a scoping review protocol.

INTRODUCTION: Health inequities are defined as unfair and avoidable differences in health between groups within a population. Most health research is conducted through observational studies, which are able to offer real-world insights about etiology, healthcare policy/programme effectiveness and the impacts of socioeconomic factors. However, most published reports of observational studies do not address how their findings relate to health equity. Our team seeks to develop equity-relevant reporting guidance as an extension of the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) statement. This scoping review will inform the development of candidate items for the STROBE-Equity extension. We will operationalise equity-seeking populations using the PROGRESS-Plus framework of sociodemographic factors. As part of a parallel stream of the STROBE-Equity project, the relevance of candidate guideline items to Indigenous research will be led by Indigenous coinvestigators on the team. METHODS AND ANALYSIS: We will follow the Joanna Briggs Institute method for conducting scoping reviews. We will evaluate the extent to which the identified guidance supports or refutes our preliminary candidate items for reporting equity in observational studies. These candidate items were developed based on items from equity-reporting guidelines for randomised trials and systematic reviews, developed by members of this team. We will consult with our knowledge users, patients/public partners and Indigenous research steering committee to invite suggestions for relevant guidance documents and interpretation of findings. If the identified guidance suggests the need for additional candidate items, they will be developed through inductive thematic analysis. ETHICS AND DISSEMINATION: We will follow a principled approach that promotes ethical codevelopment with our community partners, based on principles of cultural safety, authentic partnerships, addressing colonial structures in knowledge production and the shared ownership, interpretation, and dissemination of research. All products of this research will be published as open access.

Meeting Indigenous youth where they are at: knowing and doing with 2SLGBTTQQIA and gender non-conforming Indigenous youth: a qualitative case study.

BACKGROUND: Research carried out in partnership with Indigenous youth at The Native Youth Sexual Health Network (NYSHN) demonstrates that Indigenous youth can (and do) develop and implement public health interventions amongst their peers and within their communities, when supported by non-youth allies and mentors. METHODS: Together, NYSHN and Well Living House researchers co-designed a qualitative case study to demonstrate and document how Indigenous youth can and do practice their own form of public health implementation research (PHIR) in the realm of mental health promotion for 2SLGBTTQQIA and Gender Non-Conforming Indigenous youth. Academic and Indigenous youth researchers were: participant observers; conducted a focus group; and designed and implemented an online survey with Indigenous youth project participants. Governance, intellectual property, financial terms and respective academic and NYSHN roles and responsibilities were negotiated using a customized community research agreement. The data were thematically analyzed using a critical decolonizing lens that recognizes the historic and ongoing marginalization of Indigenous peoples while also highlighting the unique and diverse strengths of Indigenous communities' knowledge and practice in maintaining their health and wellbeing. RESULTS: Analysis revealed how colonialism and intergenerational trauma have impacted Indigenous youth identity and the value of self-determination as it relates to their identity, their relationships, health and wellbeing. We also learned how knowing and doing about and for Indigenous youth needs to be youth determined - 'nothing about us, without us' -- yet also supported by allies. Finally, our analysis shares some promising practices in knowing and doing for and with Indigenous youth. CONCLUSIONS: This study provides a reminder of the need to centre Indigenous youth throughout PHIR in order to realize sustainable benefit from research, services and programming. It emphasizes the need to recognize Indigenous youth as leaders and partners in these initiatives, support their efforts to self-determine, compensate them as partners, and prioritize Indigenous youth-determined frameworks and accountability mechanisms.

Race and ancestry in biomedical research: exploring the challenges.

The use of race in biomedical research has, for decades, been a source of social controversy. However, recent events, such as the adoption of racially targeted pharmaceuticals, have raised the profile of the race issue. In addition, we are entering an era in which genomic research is increasingly focused on the nature and extent of human genetic variation, often examined by population, which leads to heightened potential for misunderstandings or misuse of terms concerning genetic variation and race. Here, we draw together the perspectives of participants in a recent interdisciplinary workshop on ancestry and health in medicine in order to explore the use of race in research issue from the vantage point of a variety of disciplines. We review the nature of the race controversy in the context of biomedical research and highlight several challenges to policy action, including restrictions resulting from commercial or regulatory considerations, the difficulty in presenting precise terminology in the media, and drifting or ambiguous definitions of key terms.

Universal health care, genomic medicine and Thailand: investing in today and tomorrow.

One potential outcome of investing in genomic medicine is the provision of tools for creating a more cost-effective health-care system. Partly with this aim in mind, Thailand has launched two genotyping initiatives: the Thai SNP Discovery Project and the Thai Centre for Excellence in Life Sciences Pharmacogenomics Project. Together, these projects will help Thailand understand the genomic diversity of its population and explore the role that this diversity has in drug response and disease susceptibility in its population. A major future challenge will be for Thailand to integrate genomic medicine in its relatively young universal health-care system.

South Africa: from species cradle to genomic applications.

The South African government is committed to science and technology innovation, to establishing a knowledge-based economy and to harnessing life-sciences research for health and economic development. Given the constraints and the early stage of development of the field as a whole in South Africa, we found an impressive amount of research on human genomic variation in this country. Encouragingly, South Africa is beginning to apply genomics to address local health needs, including HIV and tuberculosis (TB) infections. We document a number of initiatives in South Africa that are beginning to study genetic variation within the various local indigenous populations. Other early initiatives focus on pharmacogenetic studies, mutation characterization in individual disease genes and genome-wide association studies. Public engagement in genomic issues is spear-headed by The Africa Genome Education Institute.

The next steps for genomic medicine: challenges and opportunities for the developing world.

This is a historical moment on the path to genomic medicine - the point at which theory is about to be translated into practice. We have previously described human genome variation studies taking place in Mexico, India, Thailand, and South Africa. Such investments into science and technology will enable these countries to embark on the path to the medical and health applications of genomics, and to benefit economically. Here we provide a perspective on the challenges and opportunities facing these and other countries in the developing world as they begin to harness genomics for the benefit of their populations.

Genomics, public health and developing countries: the case of the Mexican National Institute of Genomic Medicine (INMEGEN).

In 2004, the government of Mexico established the National Institute of Genomic Medicine (INMEGEN), to carry out disease-related genomic studies that will address national health problems and stimulate scientific and technological development by generating new commercial products and services in genomic medicine. Towards this end, INMEGEN is carrying out a large-scale genotyping project to map genomic variation within its own population. The initiative is expected to generate a key resource for local researchers to understand disease susceptibility and variation in drug responses, which will contribute to Mexico's goal of developing public health genomics - a field in which Mexico is proving to be a leader amongst emerging economies.