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With focus on the development and use of artificial intelligence (AI) systems in the digital health context, we consider the following questions: How does the European Union (EU) seek to facilitate the development and uptake of trustworthy AI systems through the AI Act? What does trustworthiness and trust mean in the AI Act, and how are they linked to some of the ongoing discussions of these terms in bioethics, law, and philosophy? What are the normative components of trustworthiness? And how do the requirements of the AI Act relate to these components? We first explain how the EU seeks to create an epistemic environment of trust through the AI Act to facilitate the development and uptake of trustworthy AI systems. The legislation establishes a governance regime that operates as a socio-epistemological infrastructure of trust which enables a performative framing of trust and trustworthiness. The degree of success that performative acts of trust and trustworthiness have achieved in realising the legislative goals may then be assessed in terms of statutorily defined proxies of trustworthiness. We show that to be trustworthy, these performative acts should be consistent with the ethical principles endorsed by the legislation; these principles are also manifested in at least four key features of the governance regime. However, specified proxies of trustworthiness are not expected to be adequate for applications of AI systems within a regulatory sandbox or in real-world testing. We explain why different proxies of trustworthiness for these applications may be regarded as 'special' trust domains and why the nature of trust should be understood as participatory.

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Forests boast essential resources and potential to mitigate climate change, meriting the development of conservation policies on all governmental scales. Ecosystem services provided by forests, including biodiversity, air quality, and food and fuel production, make forests valuable assets for climate-vulnerable communities that often lack the means to cope with ecosystem service degradation resulting from climate change. Historically, these vulnerable communities are previously marginalized and socio-economically limited, and climate change augments already-existing injustices. Policy discussions around managing forests and carbon, therefore, must consider environmental justice as well as diversity, equity, and inclusion to better meet the needs of all constituents. Using R, we perform a review of forest, climate, and policy peer-reviewed literature published between 2018 and 2021 for prevalence of topics related to diversity, equity, inclusion, and justice (DEIJ). We select DEIJ terms a priori and a posteriori based on our understanding of DEIJ and common considerations of the literature. Out of 2891 unique articles, 15.7% of literature mentioned at least one DEIJ term in the title, keyword list, or abstract. We identify which journals have published DEIJ literature more often in the context of forest, climate, and policy, and we perform a co-occurrence analysis of additional common themes. Concepts such as ecosystem services and economics appeared often in the literature, as well as REDD+ as a specifically mentioned policy. We call for increased consideration of DEIJ in forest, climate, and policy discussions and literature, as vulnerable communities historically have been excluded from and victimized by the conversations held among large, economically motivated entities.

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During public health emergencies, the work of prevention and control must be normalised, and coordination between economic development and epidemic prevention is crucial. However, in China, there is a lack of research on participatory governance in public health emergencies, particularly from a legal perspective. Existing studies are insufficient in terms of using legal texts and exploring legal governance in a normative sense, and there is an inadequate in-depth exploration of issues such as the legitimacy, path, motivation, and other aspects of participation. This article addresses these gaps by analysing the issues of participatory governance in public health emergencies from a legal perspective, using practical cases as examples. The research has shown that there are significant differences among the three types of organisations regarding their internal motivation, external incentives, and legal basis, and therefore it is necessary to distinguish different participation paths. Finally, we propose several measures to promote the active and sustained participation of organisation in governance, including cultivating the ability of organisations, emphasising organizational demands, seeking consensus, strengthening the guiding role of legislation, and broadening the channels of engagement.

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As patient-advocacy, public policy and clinical researchers with special knowledge on Responsible Research Innovation (RRI) governance and the public health and psychology underlying patient engagement, we read with interest the comment contribution by Richards et al., "Reflections on patient engagement by patient partners: How it can go wrong" (Richards et al. in Res Involv Engagem 9:41, 2023. https://doi.org/10.1186/s40900-023-00454-13 ). As a way to help meet the "take-away actions for readers" included by the authors at the end of the article, we would like to further stimulate discussion with relevant stakeholder communities about the need to rethink the use of "expert patient". Based on our experience, the lack of a governance model engaging patients who are representative of the target patient community, as opposed to expert patients, is at the root of the tokenistic approach, the "patient partner as a checkmark statement" and the "lack of recognizing the vulnerability of patient partners", which results in "patient engagement going wrong". According to our experience, the Responsible Research Innovation (RRI) MULTI-ACT model has the potential to help meet these challenges.

In their article, Richards et al. (Res Involv Engagem 9:41, 2023. https://doi.org/10.1186/s40900-023-00454-13 ) reflect on the practices of patient engagement in research, highlighting not only the value and opportunity of including people suffering from a disease as coinvestigators in the research process but also the risks and errors that must be avoided in such a process. Along this line of discussion­and based on our experience of research, teaching and patient advocacy­we further reflect on the nature of the concept of "expert patient" in this paper. In particular, we argue for the importance of guaranteeing the wide inclusion of all the different kinds of "experiential knowledge" that patients may bring into the research project, and we question the risk of a poorly representative approach if only guided to select patients with acquired knowledge and expertise about the scientific research process itself. Based on our experience, the Responsible Research Innovation (RRI) governance models have the potential to help meet these challenges.

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Social participation, also termed stakeholder voice, is an important component of health system governance. Increased interactions between the community and policy makers could facilitate a more responsive health system that targets the needs of the community better. Recently, the World Health Organization (WHO) published a handbook on social participation that identified five key themes for ministries of health to consider when engaging the input of the community. In this rapid systematic literature review, we aimed to identify quantitative and qualitative measures that have been used to assess aspects of social participation involving people and policy makers. We identified 172 measures from 48 studies from countries in all six WHO regions. These measures were categorized by all five themes from the handbook on social participation and these measures are linked to 27 concepts. This rapid review found that the focus of measures is largely on the existence of participation-be it by the general population or specific vulnerable groups-rather than on the quality of their participation. The measures in this inventory may be useful for ministries of health and other key stakeholders to use when developing methods to assess and encourage social participation in their context.

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Participation and collaboration of citizens and organized stakeholders in public decision-making is widely believed to improve environmental governance outputs. However, empirical evidence on the benefits of participatory governance is largely scattered across small-N case studies. To synthesize the available case-based evidence, we conducted a broad case-based meta-analysis across 22 Western democracies, including 305 individual cases of public environmental decision-making. We asked: How do 'more' participatory decision-making processes compare against 'less' participatory ones in fostering - or hindering - strong environmental governance outputs, (i.e. environmental provisions in plans, agreements or permits)? Which design features make a difference? What role does the decision-making context play? How do results change if we control for the intentions of the leading governmental agency? To capture the central design features of decision-making processes, we distinguish three dimensions of participation: the intensity of communication among participants and process organizers; the extent to which participants can shape decisions ("power delegation"); and the extent to which different stakeholder groups are represented. Our regression analysis yields robust evidence that these three design features of participation impact upon the environmental standard of governance outputs, even when controlling for the goals of governmental agencies. Power delegation is shown to be the most stable predictor of strong environmental outputs. However, communication intensity only predicts the conservation-related standard of outputs, but not the environmental health-related standard of outputs. Participants' environmental stance was another strong predictor, with considerable variation across different contexts. While our results remain broadly stable across a wide range of contexts, certain contextual conditions stood out in shaping the relation between participation and environmental outputs. Overall, our findings can inform the design of participatory processes that deliver governance outputs of a high environmental standard.

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Good governance-aligned with human rights and rights-based care, participation, inclusion, and person-centredness-of digital care systems is integral to their ability to meet their objectives. To gain insight into existing governance structures and processes and participation experiences across Europe and lay foundations for the SHAPES Project's network governance (a healthy and active ageing Innovation Action consortium), our objectives included: 1) expand the list of known stakeholders, 2) explore how the range of stakeholders participate in health and social care governance, 3) develop an inventory of barriers and facilitators. Using an empirical, survey method, we consulted SHAPES Project partner organisations, with respondents invited to suggest specific participation barriers and facilitators. 16 organisations responded. Numerous additional stakeholders were identified. Circa 150 unique barriers and facilitators were reported, rationalised into 20 superordinate categories. Six cross-cutting themes were assembled: dimensionality and flux; power; opportunity and environments; interest, motivation, and choice; valuing governance participation, and duality. This work allows consideration of a wide range of stakeholders for the SHAPES collaborative governance model and future research, and for system design with the benefit of a detailed inventory of barriers and facilitators, and thematic contextualisation. Participation is modifiable and we suggest intervention targets and mechanisms.

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BACKGROUND: Tunisia has been engaged in the Societal Dialogue (SD) for Health process since 2012, a participatory health governance process aimed at bringing in people's voice into health policy-making. Its first success was the recently released National Health Policy 2030. This paper aims to document the SD process and to bring out the lessons learned to inspire other countries. METHODS: This study was based essentially on a qualitative analysis of semi-structured interviews with citizen jury members and health experts that took place from May to September 2018. The qualitative analysis adopted an inductive-deductive approach according to a cross-matrix between the themes of the interview of the two groups of interviewees. RESULTS: The qualitative analysis of the data highlighted that the Societal Dialogue created a health democracy dynamic with inclusive dialogue spaces for the population, communities, and civil society to participate in health system design. It constituted a multi-actor and multidisciplinary coordination platform to increase consensus building among actors. Initial government support and high levels of volunteer commitment allowed the process to achieve a certain level of sustainability. However, this process faced and still faces many challenges such as overreliance on volunteers; a crisis of trust; political instability and the lack of an effective communication strategy. These challenges negatively influence the policy uptake of recommendations made by the Societal Dialogue for Health. CONCLUSION: The Tunisian societal dialogue experience highlights both the successes and challenges of a structured participatory platform, as well as the effort and perseverance it takes to keep such a process functional and relevant. A key lesson from this study is that this model of participatory health governance eventually reaches a stage where population, community, and civil society participation needs to be more institutionalized within the government routine so that it can credibly feed into health policy review processes and inform decision-makers on a regular basis.

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Adolescents in secondary schools have limited susceptibility to the SARS-COV-2 virus, but paradoxically are considered to be carrying the highest psychosocial burden during this pandemic. The aim of our European multi-country qualitative research was to investigate the COVID-19 crisis response in secondary schools and the role of national, regional, and local stakeholders in contributing to a participatory governance approach. We carried out 11 months of qualitative fieldwork, which included 90 respondents from the Netherlands, Ireland, and Finland for in-depth interviews and/or group discussions. Participant observation was conducted in four secondary schools to explore the interplay of day-to-day formal and informal practices of crisis governance. Our findings contribute to a better understanding of what efforts were made to facilitate participatory governance and where a bottom-up approach would have served useful in successfully implementing the COVID-19 mitigation strategies. Moreover, we show how these mitigation strategies have led to unintended consequences, such as students' difficulties with isolation and associated mental health problems, and the struggles of socialization when returning to a physical school environment. Our findings highlight the importance of the school environment in the socio-emotional developments of adolescents. We introduce the TAPIC-R model to analyze good governance, advancing the existing TAPIC model with an emphasis on the role of resilience in shaping participatory governance. We argue this is urgently needed during crises to strengthen engagement of the community, including vulnerable groups and achieve positive outcomes within and across policy structures and action domains.

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In Fairfax Media Publications Pty Ltd v Voller ('Voller') the Australian High Court held that media companies maintaining Facebook comment pages could be liable for the defamatory posts of commenters on those sites. The decision focussed entirely on whether, by maintaining the Facebook page, the companies had 'published' the statements of commenters. Hearings on other aspects of the tort litigation continue. This paper considers the implications of the tort of defamation on public participation on political will formation where, as is increasingly the case, the participation occurs virtually. Australian law has already tackled the law of defamation as a threat to freedom of political communication; Voller continues the jurisprudence by considering whether hosting an online forum for debate amounts to publication. The more recent High Court judgment in Google LLC v Defteros demonstrated the necessity of the law to align the 'acts' necessary to found legal action with the new environment of automated search engines. The troubled intersection of dematerialised practices of political and cultural discourse and jurisdictionally bound laws of defamation challenges participatory governance as tribes form and dissolve and shift between geographical interests. Defamation in Australia is a tort of strict liability; and, absenting applicable defences, any participation in communication is sufficient to make that participant a publisher and a party to the defamation. The online environment stretches words across geographical and jurisdictional boundaries, but it also stretches and contorts concepts of fault and responsibility. Participatory digital cultural practices integrating users in the creation of cultural heritage simultaneously draw participants into transgressions, both cultural and legal, which are amplified by the medium. Questions of collective guilt, 'shades' of moral responsibility and disproportionality between blameworthiness and legal liability challenge laws formulated for the printing press but now deployed in the online environment. In this way the digitized participatory environment presents deep challenges to law and legal systems, which are chained to geography. This paper considers the concept of innocent publication in the context of the digitized participatory environment and the way in which the virtual experience is dissolving concepts of geographically defined jurisdictions.

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Solving humanity's social-environmental challenges calls for collective action by relevant actors. Hence, involving these actors in the policy process has been deemed both necessary and promising. But how and to what extent can participatory policy interventions (PIs) foster collective action for sustainable environmental and natural resource management? Lab and lab-in-the-field experiments on co-operation in the context of collective action challenges (i.e. social dilemmas) and case study research on participatory processes both offer insights into this question but have hitherto mainly remained unconnected. This article reviews insights from these two streams of literature in tandem, synthesising and analysing them using the institutional analysis and development (IAD) framework in combination with the network of action situations (NAS) framework and the social-ecological systems (SES) framework. We thus perform an integrative and interpretative narrative review to draw a richer and more nuanced picture of PIs: their potential impacts, their (institutional and behavioural) mechanisms and challenges, and caveats and recommendations for their design and implementation. Our review shows that PIs can indeed foster collective action by (a) helping the relevant actors craft suitable and legitimate institutional arrangements and (b) addressing and/or influencing actors' attributes of relevance to collective action, namely their individual and shared understandings, beliefs and preferences. To fulfil this potential, the organisers and sponsors of PIs must address and link to the broader context through soundly designed and implemented processes. Complementary follow-up, enforcement and conflict resolution mechanisms are necessary to nurture, reassure and sustain understandings, beliefs and preferences that undergird trust-building and collective action. The conceptual framework developed for the review can help researchers and practitioners further assess these insights, disentangle PIs' mechanisms and impacts, and integrate the research and practice of participatory governance and collective action.

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BACKGROUND: The paper analyzes how the Accountability Can Transform Health (ACT Health) program activated bottom-up citizen action to secure government responses and more accountable health services in Uganda. The ACT Health program had two phases-Phase 1 focused on a community-level intervention studied with a randomized control trial, and Phase 2 supported citizen-led advocacy targeting government officials across multiple levels. The focus of this paper is an analysis of Phase 2, when the "people-centered advocacy" approach supported almost 400 community advocates representing 98 health facilities to organize, identify joint advocacy priorities, directly monitor health services, and collaborate on health advocacy campaigns in 18 districts. Most district campaigns focused on the complex, power-laden issue of health worker absenteeism. With a few notable exceptions, iterative cycles of engagement between citizens and the state across multiple levels are infrequently discussed in the formal literature on health accountability. METHODS: This paper is based on a comparative, inductive, practitioner-led analysis of program monitoring data from 18 multi-level health advocacy campaigns. The findings emerge from analysis of a "Heat Map," capturing grounded accounts of government responses to community-led advocacy. RESULTS: Officials in eight out of 18 districts fulfilled or surpassed commitments made to community advocates. Government responses included: increased monitoring, more downward accountability, countering backlash against advocates, applying sanctions for absent health workers, and increased budget allocations. Advocates' bottom-up advocacy worked in part through triggering top-down responses and activating governmental checks and balances. CONCLUSIONS: Methodologically, this article demonstrates the value of analyzing process monitoring and program data to understand outcomes from direct engagement between citizens and the state to improve health services. Survey-based research methods and quantitative analysis may fail to capture signs of government responsiveness and relational outcomes (such as subtle signs of shifting power dynamics) many hope to see from citizen-led accountability efforts. Practitioners' perspectives on how accountability for health emerges in practice are important correctives to much positivist research on accountability, which has a tendency to ignore the complex dynamics and processes of building citizen power.

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The COVID-19 pandemic has unmasked even more clearly the need for research and care to form a unique and interdependent ecosystem, a concept which has emerged in recent years. In fact, to address urgent and unexpected missions such as "fighting all together the COVID-19 pandemic", the importance of multi-stakeholder collaboration, mission-oriented governance and flexibility has been demonstrated with great efficacy. This calls for a policy integration strategy and implementation of responsible research and innovation principles in health, promoting an effective cooperation between science and society towards a shared mission. This article describes the MULTI-ACT framework and discusses how its innovative approach, encompassing governance criteria, patient engagement and multidisciplinary impact assessment, represents a holistic management model for structuring responsible research and innovation participatory governance in brain conditions research.

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To contribute to tuberculosis (TB) elimination, TB preventive treatment (TPT) should integrate innovative approaches including tele-contact investigation (TCI), mathematical modelling, and participatory governance. Aligning with the World Health Organisation's primary health care framework, supply is provided by the provincial health system, demand is cultivated by the community, while governance is represented by the governor, who oversees the health leadership structure, local policies, and allocation of resources. A healthy dynamic between these three components is required to achieve universal health coverage (UHC). Because of their potential to integrate health systems and engage communities, primary health care principles underpin an effective approach to TB prevention. First, the provincial health system should connect with the community through TCI to transform the status quo of passive service delivery. Second, community participation should strengthen the linkage between the health system and governance, which ensures that community action plans are aligned with provincial TPT targets. Third, governance should leverage mathematical modelling to allocate resources to those with greatest need. Central to this is a reliable TB information system that should validate a robust mathematical model to measure cost-effectiveness of the intervention. Collectively, this holistic approach to TB prevention could provide a proof-of-concept that investing in primary health care is the key to UHC.

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Health governance challenges can make or break universal health coverage (UHC) reforms. One of the biggest health governance challenges is ensuring meaningful participation and adequately reflecting people's voice in health policies and implementation. Recognizing this, Iran's Health Transformation Plan (HTP) lays out the country's blueprint for UHC with an explicit emphasis on the 'socialization of health.' 'Socialization' is seen as a key means to contribute to HTP objectives, meaning the systematic and targeted engagement of the population, communities, and civil society in health sector activities. Given its specific cultural and historical context, we sought to discern what notions such as 'civil society,' 'non-governmental organization,' etc mean in practice in Iran, with the aim of offering policy options for strengthening and institutionalizing public participation in health within the context of the HTP. For this, we reviewed the literature and analysed primary qualitative data. We found that it may be more useful to understand Iranian civil society through its actions, ie, defined by its motivation and activities rather than the prevailing international development understanding of civil society as a structure which is completely independent of the state. We highlight the blurry boundaries between the different types of civil society organizations (CSOs) and government institutions and initiatives, as well as high levels of overlaps and fragmentation. Reducing fragmentation as a policy goal could help channel resources more efficiently towards common HTP objectives. The National Health Assembly (NHA) model which was first launched in 2017 offers a unique platform for this coordination role, and could be leveraged accordingly.

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Community based participatory research (CBPR) emphasizes democratic knowledge production and joint action between academics and communities to promote health equity through multilevel interventions. While much scholarship has expressed a commitment to collaboration between researchers and communities, effective methods of structural governance between community and academic stakeholders is under explored. We fill this gap by presenting a conceptual and empirical analysis describing multiple dimensions of structural governance in CBPR partnerships. First, we integrate public policy evidence on effective collaborative governance designs with the emerging literature in CBPR to create a conceptual model. Next, we utilize internet surveys of 179 federally funded community engaged research projects to construct and assess a measure of structural governance across multiple dimensions using confirmatory factor analysis. We explore whether antecedent factors such as the stage of the partnership and ethnic composition are associated with these dimensions and we examine associations for each of these components on positive perceptions of community involvement of research and collective empowerment. We develop a robust multidimensional measure of structural governance that is positively associated with perceptions of increased community involvement in research and collective empowerment.

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The rapid development of human genome editing (HGE) techniques evokes an urgent need for forward-looking deliberation regarding the aims, processes, and governance of research. The framework of anticipatory governance (AG) may serve this need. This article reviews scholarly discourse about HGE through an AG lens, aiming to identify gaps in discussion and practice and suggest how AG efforts may fill them. Discourse on HGE has insufficiently reckoned with the institutional and systemic contexts, inputs, and implications of HGE work, to the detriment of its ability to prepare for a variety of possible futures and pursue socially desirable ones. More broadly framed and inclusive efforts in foresight and public engagement, focused not only upon the in-principle permissibility of HGE activities but upon the contexts of such work, may permit improved identification of public values relevant to HGE and of actions by which researchers, funders, policymakers, and publics may promote them.

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INTRODUCTION: Participatory governance is about state and society jointly responsible for political decisions and services. The origins and trajectory of participatory governance initiatives are determined by the socio-political context and specifically the nature of state-society relations. Participation by communities in health interventions has been promoted globally as a strategy to involve citizens in health decision-making but with little success. Such participatory governance in health should be seen not as a strategy alone but as a political project in which organized communities challenge the status-quo in health. METHODS: This paper deals with the wider socio-political context of participatory governance initiatives. It uses comparative politics literature to analyze socio-political context in Brazil and Venezuela, historically spanning half century prior to 2015, to assess whether it was conducive to participatory governance. The focus of this paper's analysis particularly is on the socio-political changes that were taking place in Brazil and Venezuela in the decades of the 1980s and 1990s. Those decades formed the bedrock on which the two countries experienced democratization and a socialist transformation that has lasted well into the first decade of the twenty-first century. The situation in the health sector is also described for the two countries showing a parallel trajectory to the wider political context and that reflected the political ideology. For this assessment, we use a contemporary framework called the 'socialist compass' which links dynamics of power relations in various ways among three domains of power, namely, state power, economic power, and social power. Socialist compass can be used to assess whether such reforms are moving towards or against social empowerment. CONCLUSION: Our analysis reveals that both Brazil and Venezuela were moving in the direction of social empowerment until at least the year 2015, just before the political turmoil started engulfing the left-leaning regimes in both the countries.

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BACKGROUND: Participation in mental health system strengthening by people with mental health problems and their families is a cornerstone of people-centred mental health care, yet there is a dearth of research about participation from low- and middle-income countries (LMICs), particularly from the Asia Pacific region. Hence, this study aimed to assess the current situation, challenges, enabling factors and future actions for service user and family participation in mental health policy making in Timor-Leste. METHODS: In-depth interviews were conducted with 85 adults (≥18 years) who were: (1) mental health service users (n = 20) and their families (n = 10); (2) government decision makers (n = 10); (3) mental health and social service providers (n = 23); (4) civil society (n = 9); and (5) other groups (n = 13). Interview data was analysed using framework analysis. RESULTS: There was limited service user, family and community participation in mental health policy making in Timor-Leste. Perceptions that policy making is a technical exercise and that people with mental health problems lack cognitive capacity, and a lack of supportive mechanisms challenged participation. Enabling factors were a strong focus on human rights within the social sector, and existing mechanisms for advocacy and representation of people with disabilities in social policy making. Participants suggested bolstering civil society representation of people with mental health problems, and increasing mental health awareness and literacy, including government competencies to facilitate service user participation. CONCLUSION: The findings highlight the need for theoretical and practical focus on the role of family within mental health system development in LMICs. Global mental health research and practice should adopt a critical approach to mental health service user and family participation to ensure that the concept and strategies to achieve this are embedded in LMIC knowledge.

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Improving health governance is increasingly recognised as a key pillar for achieving universal health coverage (UHC). One good practice example of a participatory health governance platform is the National Health Assembly (NHA) in Thailand. This review of 9 years of the Thai NHA process attempted to understand how it works, given the paucity of such mechanisms worldwide. In addition, an in-depth look at its strengths and weaknesses allowed for reflection on whether the lessons learnt from this participatory governance model can be relevant for other settings. Overall, the power of stakeholder groups coming together has been impressively harnessed in the NHA process. The NHA has helped foster dialogue through understanding and respect for very differing takes on the same issue. The way in which different stakeholders discuss with each other in a real attempt at consensus thus represents a qualitatively improved policy dialogue. Nevertheless, the biggest challenge facing the NHA is ensuring a sustainable link to decision-making and the highest political circles. Modalities are needed to make NHA resolutions high priorities for the health sector. The NHA embodies many core features of a well-prepared deliberative process as defined in the literature (information provision, diverse views, opportunity to discuss freely) as well as key ingredients to enable the public to effectively participate (credibility, legitimacy and power). This offers important lessons for other countries for conducting similar processes. However, more research is necessary to understand how improvements in the deliberative process lead to concrete policy outcomes.