Citizens Council Research Articles

Public Health Challenges for 2050 in the Netherlands

Abstract Every 4 years, the National Institute for Public Health and the Environment (RIVM) carries out the Dutch Public Health Foresight Study, commissioned by the Ministry of Health. The ninth edition (PHFS-2024) compiles an outlook on future public health and the health care system in the Netherlands. It combines a business-as-usual Trend Scenario with literature study and a range of qualitative and mixed-methods approaches. The Trend Scenario comprises projections up to 2050 for a broad range of epidemiological indicators. Such as (healthy) life expectancy, disease burden, life style factors. The qualitative and mixed methods approaches supported an incremental intersubjective process. Methods were a focus groups study, stakeholder sessions and workshops. An important innovation in this study was the Citizen Council and Panel. The outcomes show that demographic development, in particular growth of the group people at high age with multimorbidity, will lead to high pressure on the formal and informal health care system but also on e.g. mental health. A life course approach applied shows that decreasing mental health of youth will have long term consequences. Also, overweight will deeply impact older people’s health in the future. Lastly, climate change in combination with e.g. energy transition will deeply affect our society and living environment. Next to these challenges, there will also be opportunities to improve health. Building a climate-proof living environment that also stimulates healthy life styles and social interaction is one of them. However, improving health has linkages with policy areas outside the traditional public health domain as well and requires, firstly, a Health in/for All Policies approach. Secondly a whole-of-society approach in which companies and civil organizations take action is needed. All these efforts can only be effective if people and communities are put at the core of all health policies.

“A Bloody Migrant Who Thinks He Can Run a Union”: The Case of Jerzy Bielski, a Migrant Trade Unionist in 1950s Australia

Jerzy Bielski, a Polish displaced person (DP) who resettled in Australia in 1949, was the first post-war migrant to work for an Australian trade union. He was recruited in 1951 by the Australian Workers Union (AWU) as a migrant unionist and, some years later, established his own migrant trade union: the New Citizens Council. The council faced heavy criticism from within the trade union movement, including by right-wing DPs who, acting as Cold War warriors, were instrumental in the Labor Party split in the mid-1950s. Ultimately, this article argues that migrant trade union activism has a longer post-war history than is commonly acknowledged.

How do we speak about algorithms and algorithmic media futures? Using vignettes and scenarios in a citizen council on data-driven media personalisation

‘New’ media and algorithmic rules underlying many emerging technologies present particular challenges in fieldwork, because the opacity of their design, and, sometimes, their real or perceived status as ‘not quite here yet’ – makes speaking about these challenging in the field. In this article, we use insights from a three-stage citizens council investigating citizens’ views on developments in data-driven media personalisation to reflect on the potentials of using future-orientated vignettes and scenarios in data collection on user experiences, expectations and the ethics of algorithms. We present the possibilities and potentials of using vignettes as part of a data collection approach in user-centric algorithm studies which invites users’ contextual experiences of algorithms but also enables more normative reflections on what good looks like in contemporary datafied societies.

Why so far ahead? Climbing the participation ladder in public health foresight

Abstract Issue In the Netherlands, the National Public Health Foresight Study (PHF) is published every 4 years, as starting point for national and local public health policy development. As these policies impact citizens’ health and lives, it is important to include their voices. We piloted an approach to strengthen this engagement to learn and to inspire PHF in other (country) settings. Problem description PHF is usually expert-based. Citizen engagement, beyond consultation, is not yet common practice. In the Dutch PHF-2024, we engage citizens both as advisors (citizen council, N = 30 and panel, N = 500) and as target group (focusgroups N = 40). Intentionally the scope is diffuse, allowing for unexpected input. What can we learn from this approach, and how do the citizens contribute to the PHF? Results - Citizens of all ages, backgrounds and education types are well able to discuss health (determinants), data and indicators; - They have intrinsic motivation to contribute to better knowledge, feel responsible for effective engagement and are eager to engage across different backgrounds and population groups; - Integration of outcome into the PHF process is valuable, enriching scientific with experiential knowledge and facilitating results communication; - Fundamental questions, e.g., about foresight time frames (“why look so far ahead as the world is in crisis right now!”) are raised by the citizens, showing that these need to be better addressed in order to make PHF relevant for a broader public. Lessons - More permanent engagement of the citizens is needed to enable learning and development; - earlier engagement in the PHF process may enable joint development of core questions and issues to be addressed; - The results are highly encouraging; piloting this approach in other foresight types and in various contexts is therefore needed to refine and further develop it. Key messages • Citizen engagement can and should be strengthened to include citizen voices in the PHF process, informing policies that impact on their lives. • Citizens of all backgrounds, with their experiential knowledge, can be valuable partners in PHF, that provide important input.

Roles of Advisory Councils in Urban Governance

Urban governance (UG) is a place-based network of cooperation between public and non-public actors where public authorities play a strategic role in deciding on city matters. A number of UG actors include advisory councils (ACs), characterized by a long tradition, universality, stability and objectives related to urban affairs. The article aims to identify AC roles in UG. In addition, the author hypothesizes a correlation between the number of official (statutory) and informal (not legally regulated) roles and differences between ACs in terms of the roles they play. The hypotheses were verified in qualitative research. 57 semi-structured interviews were conducted with members of the youth councils, senior citizen councils, sport councils, and councils for residents with disabilities in 16 Polish cities. The interview transcripts were uploaded to QDA Miner for encoding and analysis. It was found that all ACs, regardless of their official roles, play informal roles, and all these roles are related to UG. There is no correlation between the number of official and informal roles, which would make ACs very similar unless the mandatory character of the roles played by the council for residents with disabilities, which differs this AC from the other. The results of the study lead the author to recommend revisions to AC regulations in order to increase their participation in the UG.

Deliberative dialogue on euthanasia in girls, boys and adolescents. Prequel to the Cabildo Ciudadano (Citizen Council) carried out in Colombia.

To date, there is a lack of published information on the utilization of the Deliberative dialogue methodology and the right to a dignified death in minors under 18 years of age in Colombia and Latin America. To examine the issue of children and adolescents' entitlement to a dignified death, including the criteria for exclusion, and to formulate a comprehensive plan for pediatric palliative care. A public policy document will be created with the aim of supporting the implementation of Resolution 825/2018. Participatory Action Research utilizing a Deliberative dialogue methods that has been adapted based on feminist epistemological principles. The outcome of the exercise was the production of a document containing Public Policy recommendations regarding euthanasia in minors and its submission to the Ministry of Health and Social Protection of Colombia a few days prior to the release of the Resolution regulating the right to a dignified death for this population. Additionally, the conclusions of this event enabled the creation of a guide for the implementation of (Cabildos Ciudadanos) Citizen Council, in which girls, boys, and adolescents are included, trans-disciplinarity is encouraged, and feminist epistemological foundations are explored. The deliberative dialogue method may serve as a cost-efficient alternative to replace or complement participatory approaches utilized in the development of public health guidelines and policies.

기후위기 대응을 위한 시민의 직접참여권

Climate change or climate crisis, the cause of global warming, is a problem directly related to the fundamental rights stipulated in our Constitution and can be dealt with from the perspective of environmental rights, equality rights, and social rights. More broadly, it can be discussed from the viewpoint of human dignity and value and the right to pursue happiness. In addition, the climate crisis issue can be approached from the perspective of democracy in addition to the aforementioned fundamental rights.
 In other words, in responding to the climate crisis, citizens are no longer an object, but a subject to share and solve problems with the state and local governments. Accordingly, the Korean government established the ‘2050 Carbon Neutrality Committee’ in May 2021, composed of related ministries, experts, and civic groups, to respond to the climate crisis that is becoming a global problem. However, it has been criticized in several respects.
 Therefore, I think the case of the Climate Civic Council in France, which is recognized as a representative example of citizen participation in responding to the climate crisis in the European Union, is that Korea's Carbon Neutral Citizens Council, which is being criticized as above, will respond better to the climate crisis and promote citizen participation in the future. It is judged that it will be a good reference for forming social trust by properly reflecting the voice.

Vigilantismo y reconstrucción del tejido social en Tancítaro, Michoacán

This article deals with the case of the self-defense of the municipality of Tancitaro, Michoacan, and the security model emanating from it. Unlike most Michoacan self-defense groups, Tancitaro managed to build a security model with broad legitimacy based on three strategic pillars: reliable elite municipal police; citizen security councils created in the barricades and a project to rebuild the social fabric -damaged by organized crime- based on a utopia of Buen Convivir. This is an essay on local security not closed to collaboration with the state and federal government, but with special zeal so that it is the city council and the citizen councils who have the control of the surveillance in their territory.

Whose Interest Really Matters? The Role of NGOs’ Representatives within Local Advisory Councils in Poland

The article shows the results of empirical research conducted among members of advisory councils operating in Polish cities. The study covers five types of councils: councils of NGOs, senior citizen councils, councils for residents with disabilities, labor market councils, and sports councils. The author focuses mainly on advisory council members who are also NGO representatives. Thus, they have a twofold role: a member of a collegial advisory body, which is supposed to consult local authorities, and a representative of an NGO. The article aims to reveal the motives for engaging NGOs’ representatives in social council activities. Considering the specific character of the NGO sector in Poland, one may expect that membership within social councils will become an arena for pushing the interests of NGOs. However, research results show that the motivations for involvement in social council activities do not have clientelistic patterns. The members of the councils are motivated by similar factors as in other forms of prosocial activity, which may be divided into normative, rational, and affiliative-prestigious. Council members are aware of their double role. They, therefore, distance themselves from the possibility of achieving individual (private) benefits or benefits for the NGO they are associated with. Their membership in councils is motivated primarily by a sense of duty to the group or the organization they represent or local authorities, taking part in the decision-making, and being a member of the prestigious group of experts they consider advisory councils to be.

Managing COVID-19 through collaboration: applying a novel patient care model in a rural Indian community

Background Rural communities in India are vulnerable to the global pandemic of severe acute respiratory coronavirus 2 (SARS-CoV-2) due to a lack of resources and delayed access to information. To address the challenges faced by Primary Health Centers, the Karuna Trust-Lopamudra Medical Center COVID-19 High Dependency Unit (KLCHDU), a collaboration between a local hospital, a non-governmental organization, infectious disease physicians from an academic medical center in the United States, and a local citizens council, was established in May 2021. This collaboration implemented diagnostic and management COVID-19 protocols recommended by the Infectious Diseases Society of America, the National Institute of Health, and the U.S. Centers for Disease Control and provided basic training on recommended practices to Primary Health Center and other local healthcare workers. Methods All local patients between 1 May 2021 through 31 July 2021 who tested positive for SARS-CoV-2 with a rapid antigen test or polymerase chain reaction test were admitted to the KLCHDU and were included in this study. Patient demographics, medical history, hospital course, and laboratory findings were evaluated to determine the outcomes of patients treated within this unique healthcare model. Results Eighty-three patients (54% male) qualified for inclusion during the study period. Common comorbidities included hypertension (52%), diabetes mellitus (48%), and coronary heart disease (10%). Nearly one-third of patients had received at least one dose of SARS-CoV-2 vaccine. The most frequently administered hospital medications were dexamethasone (65%), low molecular weight heparin (54%), and remdesivir (53%). The average absolute leukocyte count was 1534 cells/µL, average blood glucose was 182 mg/dL, average D-dimer was 849 ng/mL, and average NEW-2 score on admission and discharge was 4.4 and 3.2. The average duration of hospital stay was five days. Eleven (13%) patients were prescribed supplemental oxygen at discharge and one patient died from infection complications. Conclusions Our data show a duration of inpatient hospitalization and mortality rate on the lower end of most published data. The results of our study encourage allocation of resources based on recommended protocols and the use of telehealth for collaboration and resource sharing.

From Advice and Consultation to Local Co-governance. The Case of Advisory Councils in Polish Cities

The paper draws on the empirical findings of the research exploring the functions of local advisory councils (ACs). ACs are conceptualized as the form of participation placed between ‘advising and opinion-giving’ and ‘co-governance’ according to Fung’s approach (2006). Youth councils, senior citizen councils, and councils for residents with disabilities – that operate in 65 Polish cities – are put under examination. The article presents the results of the desk research, questionnaire, and interviews with the AC members addressing the issues of the origins of ACs in Poland, their membership and the way members are recruited, and AC functions and their relations with city authorities and community. The authors conclude by pointing to the pro-active role of ACs in local governance, but also indicate that their role as a stakeholder in co-governance requires them to contribute to policy decisions going beyond and above the advice and consultation provided so far.

Bürgerräte – Abhilfe gegen die Repräsentationskrise oder demokratiepolitisches Feigenblatt?

Since the 1990s, direct democracy has been the favored method to combat the weakness of representative institutions in Germany . In recent years, its proponents-not least the Greens and the SPD-have had a change of heart . Instead of plebiscitary measures, they now favor deliberative forms of citizen participation that are not binding for the decision makers and can be triggered “from above” by administrative and/or parliamentary institu­tions . Advocates moreover emphasize the advantage of the random selection of participants that is meant to ensure a high degree of social representativeness . The strengthening of the self-efficacy of the citizens that is supposed to be the main benefit of their participation can, however, only occur when citizens’ recommendations are actually reflected in the political decisions . The citizen councils held or initiated at the federal level in Germany in 2019 and 2021 fail to meet this intended objective and appear to primarily serve as a democratic fig­leaf .

¡Chile despertó! Una investigación-acción en formación ciudadana de futuros docentes durante el estallido social

The current paper shows the results obtained in an action research related to an educational intervention named ‘Modulo Cabildo Ciudadano’ (Module Citizen Council), aimed to strengthen citizenship competences and constituent empowerment of a group of future Elementary Education teachers. To achieve it, we addressed the Chilean social outbreak occurred between 2019 and 2020 and the resulting constitutional process, both synchronic to the development of this research. The evaluation of the educational intervention was performed using a mixedmethods approach with the prevalence of a qualitative analysis. Hence, we utilized fieldnotes, questionnaires, semi-structured interviews and a discussion group. The data obtained was analyzed with qualitative content analysis and descriptive statistics. The results obtained reveal the potential of the treatment of current social problems to develop citizenship competences and interest in public issues. Moreover, we determined various strengths and weaknesses, and some proposals for the redesign of the educational module.

Attrition in long-term deliberative processes. The neighbourhood consultative councils in Timisoara

ABSTRACTIn 2003, the neighbourhood citizen councils in Timisoara (Romania) were founded, with the aim of involving inhabitants in the decision-making process. This mini-public has been rewarded several times on European and national level for its innovative components, but has gradually become weaker and fewer citizens got involved. While much research investigates the determinants of public engagement and the linkage between participation and the quality of decision-making, little attention is paid to an analysis regarding attrition. The paper addresses this void in the literature and aims to explain the reasons for which citizens pulled out from this deliberative process. The analysis is qualitative and relies on primary data collected through personal participatory observations, interviews and document interpretation. Findings mainly indicate towards the self-selection procedure, an unlimited duration accompanied by the decrease in innovative components, perceptions of a low impact on the decision-making process and weak connections between politics and community.

Apropiación territorial y recursos hídricos en la cuenca de los ríos Grijalva y Usumacinta, México

Se discute, bajo la estructura de un ensayo científico, sobre la potestad y aprovechamiento del agua en la cuenca de los ríos Grijalva y Usumacinta, en el sureste de México. Se distinguen conflictos asociados con las políticas públicas que promueve el estado mexicano, inclinadas a privatizar y concesionar bienes y servicios públicos. Las tendencias son preocupantes para los usuarios públicos del agua en términos de equidad, disponibilidad, costo, calidad e impactos socio ambientales derivados de modelos extractivos y de transformación que privilegian la rentabilidad económica sobre el desarrollo social. Alternativamente, debe consolidarse la participación ciudadana dentro de las figuras legales de los consejos y comités de cuenca, de manera que su peso legal y representación social apuntale territorialidades más democráticas.

The National States Rights Party: A History by Michael Newton

Reviewed by: The National States Rights Party: A History by Michael Newton Elizabeth M. Nix The National States Rights Party: A History. By Michael Newton. (Jefferson, N.C.: McFarland and Company, 2017. Pp. viii, 268. $39.95, ISBN 978-1-4766-6603-7.) The National States Rights Party: A History by Michael Newton recounts in exacting detail the history of the fascist organization that nominated Arkansas governor Orval E. Faubus for the U.S. presidency in 1960. Founded in 1958, the National States Rights Party (NSRP) recruited dues-paying members as long as they were Christian and "loyal white racists" (p. 210). However, the organization was less a political party than a conglomeration of white supremacists that published a long-lived newsletter, the Thunderbolt. Newton quotes one unnamed founder as remarking, "Without The Thunderbolt we are just another Klan or White Citizens Council" (p. 51). The NSRP loosely organized racists and fascists under the leadership of Jesse Benjamin "J. B." Stoner Jr. and Edward Reed Fields, two educated men who did not hide behind hoods but sought out the spotlight to advance their bigotry. The strength of Newton's work is his chronological collection of primary documents produced by hate groups, an archive he has been building since age fourteen. One of the book's images is a 1954 flyer from the Realpolitical Institute with the slogan "Whiteman Awake—The Hour Is Late!" (p. 48). There is also an image of a membership form for the NSRP, guaranteeing members "a sword of steel that will cut away the chains that shackle the White-man in America" (p. 49). Newton includes NSRP documents between 1958 and 1980 in appendixes and transcribes the entire contents of lengthy letters in the text. No one today can read this book without drawing parallels to America's current toxic racial situation. The clean-cut white men in collared shirts waving Confederate flags at the University of Alabama to protest the admission of black coed Autherine Lucy in 1956 would not have looked out of place in Charlottesville, Virginia, in 2017. In a letter to Elijah Muhammad, J. B. Stoner wrote, "To every place it has spread, Islam has been a blight and brought darkness," indicating that the Far Right targeted Muslims long before September 11, 2001 (p. 39). When NSRP members were charged in the bombing of an Atlanta synagogue in 1958, their allies printed headlines in the American Nationalist asserting "Synagogue Bombing a Fraud" and "Jewish Groups Use Bomb Incident to Confuse Gentiles," precursors to Alex Jones's conspiracy theories (p. 58). The Thunderbolt is a print version of the Daily Stormer, indicating the NSRP's understanding of the power of media to organize far-flung, like-minded individuals. On their membership forms, NSRP members pledged to oppose "Internationalism" andtosupport "Only White Christian Immigration … America First and American Patriotism," phrases familiar to anyone in twenty-first-century America (p. 49). [End Page 794] This volume is the twelfth book about hate groups or organized crime that Newton has published with McFarland and Company. He is clearly in familiar territory and assumes his readers are as well. The encyclopedic nature of this history forces the reader to work hard to extract any analysis or narrative. In this book's 207 pages of text, Newton introduces hundreds of individuals without including contextual descriptors. For example, Edward Reed Fields is profiled in the first chapter, but we learn that he was a founder of the NSRP in chapter 3. Michael Newton has authored over three hundred books, many of them encyclopedias. In this slim volume he offers an illustrated chronology, supported by information from sources including metapedia.org, which defines itself as a pro-European alternative online encyclopedia. Steeped in the world of hate groups since he was a teenager, Newton provides a collection of racist memorabilia that sadly is not dead and is not even past. Elizabeth M. Nix University of Baltimore Copyright © 2018 The Southern Historical Association

Involvement that makes an impact on healthcare: Perceptions of the Swedish public.

Aim: ‘Participation and influence in society’ is the first of 11 objective domains in Swedish public health policy. The aim of this article is to investigate the views of the Swedish general population on the impact of a range of health participation activities, and whether these views were associated with sociodemographic characteristics. Methods: The study utilizes a national representative survey of the Swedish population, aged 15 years and over (n = 1500). Results: Apart from voting in regional elections – which most of the respondents believed to be an influential way to make improvements in healthcare (74%) – respondents believed more in individual patient activities than activities associated with adopting a citizen role and acting collectively. A majority of respondents believed in the impact of replying to patient surveys (67%), making a complaint (61%), talking directly to staff (58%) or changing their healthcare provider (54%). Fewer believed in the impact of joining a patient organization (46%), taking part in a citizen council (35%) or joining a political party (34%). Beliefs in impact increased with educational attainment and decreased with age. Conclusions: The results suggest people have more confidence in the impact of participating as individual patients rather than collectively and as citizens. To ensure that activities enable ‘participation and influence in society’, complementary opportunities for collective involvement that also take into account under-represented voices such as those with a low level of education need to be developed.

Participatory democracy and law-making in contemporary Brazil

ABSTRACTDuring the re-democratization process that followed the 1964–1985 military dictatorship in Brazil, a variety of institutional innovations designed to provide citizens with the ability to directly influence the conception and drafting of laws, regulations and policies, and to monitor their execution have been implemented. Such initiatives vary significantly: they aim to carve out political participation and accountability at different state levels and branches, to allow for societal influence during various phases of law-making, and to safeguard the deliberative power of citizens. Also during the re-democratization period, Brazilian municipalities (which total more than 5500) became federative entities, with political, administrative and financial autonomy. Autonomy allowed cities to create citizen councils (in areas such as healthcare, welfare and housing) through which civil society participation and consensus-building among stakeholders became possible. One remarkable and recent participatory experience was the review process of the Master Plan of the city of São Paulo (urban planning legislation and regulations), which embraced a complex participative development process, engaged both the Legislative and the Executive branches, and called for citizen input for various law-making steps. Despite (or perhaps because of) its unusual scope, the São Paulo Master Plan participatory experience is valuable for identifying achievements, current and future challenges, as well as failures and legitimacy deficits that ultimately play a relevant role in shaping democracy in contemporary Brazil at the legal and institutional levels. Bearing that in mind, this article provides an overview of existing participatory mechanisms in the country, and presents the São Paulo urban planning legislation as a case study.

PHP289 - A Study Comparing the Evolution of Different Proceeses for Patient Input in Different European HTA Systems Since 2011

to identify changes made to the European HTA systems incorporating patient input since the first comparison was undertaken by the authors in 2011. Previous work compared how patient input is incorporated in European HTA systems. This study used the original web audit criteria but with a new parameter, identification of the pathways for ethical considerations. The evaluated processes representative of European HTA: France (HAS), Germany (G- BA & IQWIG), Sweden (TLV) and UK (NICE & SMC). Web audit was undertaken and compared against the following criteria: How patient groups are selected to participate in the HTA process. How PAG input is provided into the HTA process. Patient support services offered by the HTA. Patient pathways and processes for ethical considerations. The significant changes or ethical pathway findings made since 2011: HAS: Creation of a pathway for involvement of patient input into the decision making process and methodological guide for assessment of ethics considerations. G-BA: A dedicated patient involvement specialist team providing support to patient input. No mention of ethical principles. SMC: Creation of a Patient and Clinical Engagement Group (PACE) for end of life medicines and orphan & ultra-orphan medicine; Increase in numbers of patient partners in Public Involvement Network (PIN). NICE: Creation of People Involved in NICE (PIN) offering peer support to patients, carers, and Patient Involvement Programme (PIP) providing informal telephone and email advice, training and workshops. Yearly report by the Citizens Council on ethical aspects and societal views. TLV: 3 ethical principles and 16 point checklist for ethical considerations. Changes to patient pathways within European HTA are ongoing and reflect the growing move towards full engagement rather than a tokenistic or tick box approach that was traditionally practised.

To Write in the Light of Freedom: The Newspapers of the 1964 Mississippi Freedom Schools

Fifty years after Freedom Summer, To Write in the Light of Freedom offers a glimpse into the hearts of the African American youths who attended the Mississippi Freedom Schools in 1964. One of the most successful initiatives of Freedom Summer, more than forty Freedom Schools opened doors to thousands of young African American students. Here they learned civics, politics, and history, curriculum that helped them instead of the degrading lessons supporting segregation and Jim Crow and sanctioned by White Citizen's Councils. Young people enhanced their self-esteem and gained a new outlook on the future. And at more than a dozen of these schools, students wrote, edited, printed and published their own newspapers. For more than five decades, the Mississippi Freedom Schools have served as powerful models of educational activism. Yet, little has been published that documents black Mississippi youths' responses to this profound experience.