Publico – A Digital Tool for Pandemic Crisis Communication and Management

"COVID-19 vividly demonstrates the global challenges of crisis communication. A flood of pandemic-related information from various sources and highly variable quality is inundating media platforms. To counter this “infodemic”, providing high-quality information is not sufficient. Real-time feedback loops from the public to policy-makers are urgently needed to better align communication strategies, actions taken, and public perception. To achieve this, the PubliCo online platform was launched in November 2020 in Switzerland. It follows a transdisciplinary multi-stakeholder approach rooted in participatory citizen science. PubliCo (https://publico.community/en/) includes three parts: 1. PubliCo Survey, collecting quantitative data, e.g. on moral preferences, while feeding back contextualized, tailored information to users; 2. PubliCo Diaries, collecting in-depth qualitative data, which also informs efforts to adapt PubliCo Survey to the evolving situation; and 3. PubliCo Analytics, which allows policymakers and other platform users to continuously analyse the collected data. We will present the PubliCo concept, considering the following key points: 1. Ethical considerations in the development of PubliCo concerning citizen science and crisis management. 2. PubliCo as a practical tool to implement the procedural ethics concepts such as Accountability for Reasonableness. 3. Lessons learned challenges, and opportunities for the transferability of PubliCo to better manage future crises in different global contexts. With our contribution, we aim to simulate a discussion on the ethical aspects of crisis communication and the strengths and limitations of citizen participation. "

From General Principles to Procedural Values: Responsible Digital Health Meets Public Health Ethics

Most existing work in digital ethics is modeled on the “principlist” approach to medical ethics, seeking to articulate a small set of general principles to guide ethical decision-making. Critics have highlighted several limitations of such principles, including (1) that they mask ethical disagreements between and within stakeholder communities, and (2) that they provide little guidance for how to resolve trade-offs between different values. This paper argues that efforts to develop responsible digital health practices could benefit from paying closer attention to a different branch of medical ethics, namely public health ethics. In particular, I argue that the influential “accountability for reasonableness” (A4R) approach to public health ethics can help overcome some of the limitations of existing digital ethics principles. A4R seeks to resolve trade-offs through decision-procedures designed according to certain shared procedural values. This allows stakeholders to recognize decisions reached through these procedures as legitimate, despite their underlying disagreements. I discuss the prospects for adapting A4R to the context of responsible digital health and suggest questions for further research.

Ethical Deliberation in the Allocation of Respirators and Beds during the Covid-19 Pandemic in Brazil

This chapter proposes a theoretical reflection on the ethical deliberation process in the allocation of beds and respirators, in the light of the Theory of Health Justice, the Accountability for Reasonableness approach and the principle of health equity of the Brazilian Unified Health System (SUS, as per its Portuguese acronym), before the COVID-19 pandemic in Brazil. The pandemic has become a serious threat to health systems, as installed capacity has been exceeded whether in terms of material resources, equipment, technology and human resources. Thus, according to the theory of Accountability for Reasonableness, a fair and deliberative process aims to ensure resource allocation through limits and constraints (reasonableness), but government responsibility derived from human rights must be considered, allowing for health programming (accountability). Faced with this scenario, where the situation will often require us to make choices, this chapter intends to discuss the assumptions for ethical deliberation, taking into account the context of the act and its foreseeable consequences.

Inequitable access to healthcare in Africa: reconceptualising the “accountability for reasonableness framework” to reflect indigenous principles

Background The “Accountability for Reasonableness” (A4R) framework has been widely adopted in working towards equity in health for sub-Saharan Africa (SAA). Its suitability for equitable health policy in Africa hinges, at least in part, on its considerable successes in the United States and it being among the most comprehensive ethical approaches in addressing inequitable access to healthcare. Yet, the conceptual match is yet to be examined between A4R and communal responsibility as a common fundamental ethic in SAA. Methodology A4R and its applications toward health equity in sub-Saharan Africa were conceptually examined by considering the WHO’s “3-by-5” and the REACT projects for their accounting for the communal responsibility ethic in pursuit of health equity. Results Some of the challenges that these projects encountered may be ascribed to an incongruity between the underpinning ethical principle of A4R and the communitarian ethical principle dominant in sub-Saharan Africa. These are respectively the fair equality of opportunity principle derived from John Rawls’ theory, and the African communal responsibility principle. Conclusion A health equity framework informed by the African communal responsibility principle should enhance suitability for SAA contexts, generating impetus from within Africa alongside the affordances of A4R.

Value assessment frameworks: who is valuing the care in healthcare?

Many healthcare agencies are producing evidence-based guidance and policy that may determine the availability of particular healthcare products and procedures, effectively rationing aspects of healthcare. They claim legitimacy for their decisions through reference to evidence-based scientific method and the implementation of just decision-making procedures, often citing the criteria of ‘accountability for reasonableness’; publicity, relevance, challenge and revision, and regulation. Central to most decision methods are estimates of gains in quality-adjusted life-years (QALY), a measure that combines the length and quality of survival. However, all agree that the QALY alone is not a sufficient measure of all relevant aspects of potential healthcare benefits, and a number of value assessment frameworks have been suggested. I argue that the practical implementation of these procedures has the potential to lead to a distorted assessment of value. Undue weight may be ascribed to certain attributes, particularly those that favour commercial or political interests, while other attributes that are highly valued by society, particularly those related to care processes, may be omitted or undervalued. This may be compounded by a lack of transparency to relevant stakeholders, resulting in an inability for them to participate in, or challenge, the decisions. The makes it likely that costly new technologies, for which inflated prices can be justified by the current value frameworks, are displacing aspects of healthcare that are highly valued by society.

Community Water Fluoridation: Caveats to Implement Justice in Public Oral Health

Community water fluoridation (CWF), a long-established public health intervention, has been studied for scientific evidence from both of yea and nay standpoints. To justify CWF with scientific evidence inevitably leads to ethical justification, which raises the question of whether oral health is of individual concern or social responsibility. As dental caries is a public health problem, public health ethics should be applied to the topic instead of generic clinical ethics. From both pro- and anti-fluoridationists’ perspectives, CWF is a public health policy requiring a significant level of intervention. Thus, there needs to take further considerations for justifying CWF beyond the simple aspect of utility. For further ethical considerations on CWF, three caveats were suggested: procedural justice, social contexts, and maintenance of trust. The process to justify CWF should also be justified, not simply by majority rule but participatory decision-making with transparency and pluralistic democracy. Social contexts are to be part of the process of resolving conflicting values in public health interventions. Public trust in the dental profession and the oral healthcare system should be maintained over the considerations. This article suggests accountability for reasonableness as a framework to consider infringement by CWF for public justification of its implementation.

Inequitable Access to Healthcare in Africa: Reconceptualising the “Accountability for Reasonableness Framework” to Reflect Indigenous Principles

BackgroundThe “Accountability for Reasonableness” (A4R) framework has been widely adopted in working towards equity in health for sub-Saharan Africa. Its suitability for equitable health policy in Africa hinges, at least in part, on its considerable successes in the United States and it being among the most comprehensive ethical approaches in current literature in addressing inequitable access to healthcare. Methodology/FindingThis article considers applications of A4R towards health equity in sub-Saharan Africa – including the WHO’s “3-by-5” and the REACT projects – and ascribes some of the challenges that these projects encountered to an incongruity between the underpinning ethical principle of A4R and the communitarian ethical principle dominant in sub-Saharan Africa. These are respectively the fair equality of opportunity principle derived from John Rawls’ theory, and the African communal responsibility principle. ConclusionA health equity framework informed by the latter, we contend, should be more suitable for African contexts, generating impetus from within Africa alongside the affordances of A4R.

Fair allocation of cryopreserved donor oocytes: towards an accountable process

ABSTRACT A growing number of people desire ART with cryopreserved donor oocytes. The allocation of these oocytes to couples and mothers to be is a 2-fold process. The first step is to select a pool of recipients. The second step is to decide who should be treated first. Prioritizing recipients is critical in settings where demand outstrips supply. So far, the issue of how to fairly allocate cryopreserved donor oocytes has been poorly addressed. Our ethical analysis aims to support clinics involved in allocation decisions by formulating criteria for recipient selection irrespective of supply (Part I) and recipient prioritization in case supply is limited (Part II). Relevant criteria for recipient selection are: a need for treatment to experience parenthood; a reasonable chance for successful treatment; the ability to safely undergo an oocyte donation pregnancy; and the ability to establish a stable and loving relationship with the child. Recipients eligible for priority include those who: have limited time left for treatment; have not yet experienced parenthood; did not undergo previous treatment with cryopreserved donor oocytes; and contributed to the supply of donor oocytes by bringing a donor to the bank. While selection criteria function as a threshold principle, we argue that the different prioritization criteria should be carefully balanced. Since specifying and balancing the allocation criteria undoubtedly raises a moral dispute, a fair and legitimate allocation process is warranted (Part III). We argue that allocation decisions should be made by a multidisciplinary committee, staffed by relevant experts with a variety of perspectives. Furthermore, the committees’ reasoning behind decisions should be transparent and accessible to those affected: clinicians, donors, recipients and children born from treatment. Insight into the reasons that underpin allocation decisions allows these stakeholders to understand, review and challenge decisions, which is also known as accountability for reasonableness.

Accountability para a razoabilidade nos litígios de saúde: uma proposta de controle procedimental

O artigo examinou o critério procedimental baseado na accountability para a razoabilidade (accountability for reasonableness) como um método auxiliar ao controle jurisdicional nos litígios de saúde, sobretudo diante da criação da Comissão Nacional de Incorporação de Tecnologias no Sistema Único de Saúde. Estudou-se como o influxo do pragmatismo na atuação das cortes sugere um modelo judicial diverso para a concretização do direito à saúde, na tentativa de desjudicializar o debate e diminuir os riscos à equidade na distribuição dos recursos. Utilizaram-se dados empíricos colhidos por meio de revisão bibliográfica para análise da atuação concreta da Comissão. Concluiu-se que o maior controle jurisdicional do procedimento de tomada de decisão do administrador acerca da inclusão de medicamento nas listas públicas pode ser uma postura judicial pragmática tendente a produzir melhores resultados, ao exigir que a administração pública preste contas de sua atuação e demonstre as razões das decisões alocativas na assistência farmacêutica, bem como ao estimular a participação social no procedimento.