Iseal Alliance

PurposeThe primary mitochondrial disorders encompass a wide‐reaching number of clinical presentations and a spectrum of severity. It is therefore vital to know that research that is designed by academics and competitively funded, meets the core needs of people with mitochondrial disorders and their clinicians.MethodsThe Priority Setting Partnerships (PSPs) are an established and collaborative methodology that brings patients, charity representatives and clinicians together to try to establish the most pressing and unanswered research priorities. After a scoping exercise to identify relevant partners, we chose to include questions relevant to children and adults (many people have life‐long conditions) and limit our focus to the primary mitochondrial disorders. We developed a web‐based questionnaire disseminated widely asking for all patients, carers and clinicians to pose their important research questions.ResultsThis yielded 709 questions from 50 patients, 47 carers and 50 clinicians. These were grouped in to themes and were filtered for statements that were personal stories, for example, and not answerable questions. A literature search was undertaken to ensure that each question was unanswered from current evidence. This process resulted in a list of 42 discrete, answerable questions.ConclusionsAll patients and clinicians again were invited to prioritise these 42 questions using a web‐platform and a rank of ‘important’ to ‘less important’ questions was created. This identified 24 questions that were taken forward for a face‐to‐face workshop attended by a diverse range of patients, carers, charity representatives and clinicians where the relative merits and strengths of each question were debated to create a definitive ‘top 10 of unanswered research questions for mitochondrial disorders’. At every stage, we have actively sought to be inclusive of people who do not have English as a first language and people with visual impairment.

Abstract Background: In Latin America, total sales of sugar-sweetened beverages continue to rise at an alarming rate. Consumption of added sugar is a leading cause of diet-related non-communicable diseases. Coalitions of stakeholders have formed in several countries in the region to address this public health challenge including participation of civil society organizations and transnational corporations. Little is currently known about these coalitions – what interests they represent, what goals they pursue and how they operate. Ensuring the primacy of public health goals is a particular governance challenge. This paper comparatively analyses governance challenges involved in the adoption of taxation of sugar-sweetened beverages in Chile, Mexico and Colombia. The three countries have similar political and economic systems, institutional arrangements and regulatory instruments but differing policy outcomes..Methods: We analyse the political economy of SSB taxation based on a qualitative synthesis of existing empirical evidence. We identify the key stakeholders involved in the policy process, identify their interests, and assess how they influenced adoption and implementation of the tax.Results: Coalitions for and against the SSB taxation formed the basis of policy debates in all three countries. Intergovernmental support was critical to framing the SBB tax aims, benefits and instrumentation; and for countries to adopt it. A major constraint to implementation was the strong influence of transnational corporations (TNCs) in the policy process. A lack of transparency during agenda setting was notably enhanced by the powerful presence of TNCs.Conclusion: NCD prevention policies need to be supported across government, alongside grassroots organizations, policy champions and civil society groups to enhance their success. However, governance arrangements involving coalitions between public and private sector actors need to recognize power asymmetries among different actors and mitigate their potentially negative consequences. Such arrangements should include clear mechanisms to ensure transparency and accountability of all partners, and prevent undue influence by industry interests associated with unhealthy products.

Diabetes and related non-communicable diseases (NCDs) account for over 60% of the world's annual deaths, untold personal suffering, and an economically crippling burden of lost productivity. Despite the body of evidence and various calls to action, historically, the global response has bordered on apathy. Although diabetes and related NCDs remain disproportionately underfunded, the United Nations now recognises them as a major challenge to human and economic development, resulting in an action-oriented policy, frameworks and monitoring requirements that are being driven by the UN and the World Health Organization. Australia is at the forefront of many of these initiatives and is currently developing a new national diabetes strategy.

Sustainability standards and certification serve to differentiate and provide market recognition to goods produced in accordance with social and environmental good practices, typically including practices to protect biodiversity. Such standards have seen rapid growth, including in tropical agricultural commodities such as cocoa, coffee, palm oil, soybeans, and tea. Given the role of sustainability standards in influencing land use in hotspots of biodiversity, deforestation, and agricultural intensification, much could be gained from efforts to evaluate and increase the conservation payoff of these schemes. To this end, we devised a systematic approach for monitoring and evaluating the conservation impacts of agricultural sustainability standards and for using the resulting evidence to improve the effectiveness of such standards over time. The approach is oriented around a set of hypotheses and corresponding research questions about how sustainability standards are predicted to deliver conservation benefits. These questions are addressed through data from multiple sources, including basic common information from certification audits; field monitoring of environmental outcomes at a sample of certified sites; and rigorous impact assessment research based on experimental or quasi-experimental methods. Integration of these sources can generate time-series data that are comparable across sites and regions and provide detailed portraits of the effects of sustainability standards. To implement this approach, we propose new collaborations between the conservation research community and the sustainability standards community to develop common indicators and monitoring protocols, foster data sharing and synthesis, and link research and practice more effectively. As the role of sustainability standards in tropical land-use governance continues to evolve, robust evidence on the factors contributing to effectiveness can help to ensure that such standards are designed and implemented to maximize benefits for biodiversity conservation.