Addressing diagnostic gaps and priorities of the global rare diseases community: Recommendations from the IRDiRC diagnostics scientific committee.

The International Rare Diseases Research Consortium (IRDiRC) Diagnostic Scientific Committee (DSC) is charged with discussion and contribution to progress on diagnostic aspects of the IRDiRC core mission. Specifically, IRDiRC goals include timely diagnosis, use of globally coordinated diagnostic pipelines, and assessing the impact of rare diseases on affected individuals. As part of this mission, the DSC endeavored to create a list of research priorities to achieve these goals. We present a discussion of those priorities along with aspects of current, global rare disease needs and opportunities that support our prioritization. In support of this discussion, we also provide clinical vignettes illustrating real-world examples of diagnostic challenges.

Midwives' experience of respectful maternity care (RMC) globally: A meta-synthesis.

BACKGROUND: Respectful maternity care (RMC) emphasizes the social and relational elements of maternity care and is a crucial part of initiatives to improve service accessibility and quality. Women's perceptions have influenced much of what we know about RMC and contempt in the labor ward. In order to understand midwives' perspectives of RMC, this meta-synthesis focused on them. METHOD: For this inquiry, the databases PubMed/Medline, Embase, Web of Science, and Scopus were searched to find studies on midwives' perceptions of RMC written between 2011 and April 20th 2023. The included articles were to English language restriction. The results of the included research were examined using thematic analysis. Using the inclusion criteria, 84 potentially relevant articles were carefully reviewed, and only 22 were ultimately selected for synthesis. The quality of the qualitative study was assessed using the CASP, a tool for quality evaluation and PRISMA guidelines were followed. Using the MAXQDA program, the cited quotes and the original authors' interpretations were combined. RESULT: There were 22 studies total, thematic synthesis was determined to be appropriate for a total of 22 research studies. Following are the topics which we summarized our analysis: in six major themes: Midwives' conceptualizations of RMC, Midwives commitment to woman's rights, The value and impact of RMC to midwives, Midwife's perception of disrespectful care, Challenges in providing respectful maternity care, and Midwives' recommendations for optimal RMC practice. CONCLUSION: In addition to specific focus on promoting cooperation, policies to enhance health systems and strategic consideration of the midwifery profession's future are required.

Reforming the World Health Organization's Essential Medicines List: Essential but Unaffordable.

This Viewpoint proposes restructuring the WHO Essential Medicines List to remove consideration of cost and cost-effectiveness from the expert committee reviews of clinical effectiveness, safety, and public health value, and chartering a new framework for pooled global negotiation and procurement of costly medicines included in the list.

How public health crises expose systemic, day-to-day health inequalities in low- and-middle income countries: an example from East Africa.

BACKGROUND: The current Coronavirus disease pandemic reveals political and structural inequities of the world's poorest people who have little or no access to health care and yet the largest burdens of poor health. This is in parallel to a more persistent but silent global health crisis, antimicrobial resistance (AMR). We explore the fundamental challenges of health care in humans and animals in relation to AMR in Tanzania. METHODS: We conducted 57 individual interviews and focus groups with providers and patients in high, middle and lower tier health care facilities and communities across three regions of Tanzania between April 2019 and February 2020. We covered topics from health infrastructure and prescribing practices to health communication and patient experiences. RESULTS: Three interconnected themes emerged about systemic issues impacting health. First, there are challenges around infrastructure and availability of vital resources such as healthcare staff and supplies. Second, health outcomes are predicated on patient and provider access to services as well as social determinants of health. Third, health communication is critical in defining trusted sources of information, and narratives of blame emerge around health outcomes with the onus of responsibility for action falling on individuals. CONCLUSION: Entanglements between infrastructure, access and communication exist while constraints in the health system lead to poor health outcomes even in 'normal' circumstances. These are likely to be relevant across the globe and highly topical for addressing pressing global health challenges. Redressing structural health inequities can better equip countries and their citizens to not only face pandemics but also day-to-day health challenges.

Successfully Implementing Digital Health to Ensure Future Global Health Security During Pandemics: A Consensus Statement.

Importance: COVID-19 has highlighted widespread chronic underinvestment in digital health that hampered public health responses to the pandemic. Recognizing this, the Riyadh Declaration on Digital Health, formulated by an international interdisciplinary team of medical, academic, and industry experts at the Riyadh Global Digital Health Summit in August 2020, provided a set of digital health recommendations for the global health community to address the challenges of current and future pandemics. However, guidance is needed on how to implement these recommendations in practice. Objective: To develop guidance for stakeholders on how best to deploy digital health and data and support public health in an integrated manner to overcome the COVID-19 pandemic and future pandemics. Evidence Review: Themes were determined by first reviewing the literature and Riyadh Global Digital Health Summit conference proceedings, with experts independently contributing ideas. Then, 2 rounds of review were conducted until all experts agreed on the themes and main issues arising using a nominal group technique to reach consensus. Prioritization was based on how useful the consensus recommendation might be to a policy maker. Findings: A diverse stakeholder group of 13 leaders in the fields of public health, digital health, and health care were engaged to reach a consensus on how to implement digital health recommendations to address the challenges of current and future pandemics. Participants reached a consensus on high-priority issues identified within 5 themes: team, transparency and trust, technology, techquity (the strategic development and deployment of technology in health care and health to achieve health equity), and transformation. Each theme contains concrete points of consensus to guide the local, national, and international adoption of digital health to address challenges of current and future pandemics. Conclusions and Relevance: The consensus points described for these themes provide a roadmap for the implementation of digital health policy by all stakeholders, including governments. Implementation of these recommendations could have a significant impact by reducing fatalities and uniting countries on current and future battles against pandemics.

Principles of environmentally-sustainable anaesthesia: a global consensus statement from the World Federation of Societies of Anaesthesiologists.

The Earth's mean surface temperature is already approximately 1.1°C higher than pre-industrial levels. Exceeding a mean 1.5°C rise by 2050 will make global adaptation to the consequences of climate change less possible. To protect public health, anaesthesia providers need to reduce the contribution their practice makes to global warming. We convened a Working Group of 45 anaesthesia providers with a recognised interest in sustainability, and used a three-stage modified Delphi consensus process to agree on principles of environmentally sustainable anaesthesia that are achievable worldwide. The Working Group agreed on the following three important underlying statements: patient safety should not be compromised by sustainable anaesthetic practices; high-, middle- and low-income countries should support each other appropriately in delivering sustainable healthcare (including anaesthesia); and healthcare systems should be mandated to reduce their contribution to global warming. We set out seven fundamental principles to guide anaesthesia providers in the move to environmentally sustainable practice, including: choice of medications and equipment; minimising waste and overuse of resources; and addressing environmental sustainability in anaesthetists' education, research, quality improvement and local healthcare leadership activities. These changes are achievable with minimal material resource and financial investment, and should undergo re-evaluation and updates as better evidence is published. This paper discusses each principle individually, and directs readers towards further important references.

Consensus statement on measures to promote equitable authorship in the publication of research from international partnerships.

Despite the acknowledged injustice and widespread existence of parachute research studies conducted in low- or middle-income countries by researchers from institutions in high-income countries, there is currently no pragmatic guidance for how academic journals should evaluate manuscript submissions and challenge this practice. We assembled a multidisciplinary group of editors and researchers with expertise in international health research to develop this consensus statement. We reviewed relevant existing literature and held three workshops to present research data and holistically discuss the concept of equitable authorship and the role of academic journals in the context of international health research partnerships. We subsequently developed statements to guide prospective authors and journal editors as to how they should address this issue. We recommend that for manuscripts that report research conducted in low- or middle-income countries by collaborations including partners from one or more high-income countries, authors should submit accompanying structured reflexivity statements. We provide specific questions that these statements should address and suggest that journals should transparently publish reflexivity statements with accepted manuscripts. We also provide guidance to journal editors about how they should assess the structured statements when making decisions on whether to accept or reject submitted manuscripts. We urge journals across disciplines to adopt these recommendations to accelerate the changes needed to halt the practice of parachute research.