Projects & Collaborations

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Experiences of access to maternal and child healthcare for undocumented migrants in Switzerland

What is this study about?

The aim of this study is to explore and analyse the experiences of access to healthcare during pregnancy or the first 2 years of life of the child (first 1000 days) by mothers lacking legal status in Switzerland.

The aim is to observe the experiences of access to care during pregnancy and the following two years which are the most important period for building up long-lasting health. We are particularly interested in studying how irregular migrant women navigate the healthcare system, access resources or find solutions to meet their healthcare needs.

This multicentric study is organized by the University of Basel and co-funded by the Geneva Health School, University of Applied Sciences (HEdS).

Data collection and publications

Starting from September 1st 2024, the participant recruitment phase has ended. We are now completing the data analysis phase and will start soon the writing phase. All updates concerning related publications will be published here. Thank you for your interest!

For further information, please contact us: health_1000d@unibas.ch

Agequake in prisons: Improving the knowledge and awareness on aging in prisons

Research Project | 3 Project Members

Der demografische Wandel hin zu einer alternden Gesellschaft macht vor den Mauern nicht Halt. Ältere inhaftierte Personen sind eine stetig wachsende, aber gleichzeitig vergessene Bevölkerungsgruppe. Als typischen Gefangenen stellt man sich häufig eine junge, körperlich starke, männliche Person vor. In der Schweiz ist jedoch bereits jede fünfte inhaftierte Person im Alter über 50. Diese Entwicklung stellt Gefängnisse vor eine neue Herausforderung: Wer ist diese Altersgruppe? Welche Bedürfnisse haben sie? Und wie sollen wir diese versorgen? Mit diesem Öffentlichkeitsprojekt soll das Thema des «Altern im Gefängnis» vor die Mauern gebracht werden, um diesem aktuellen und kontroversen Thema Raum zu geben.

Das Forschungsteam um Prof. Dr. Bernice Elger hat über die letzten zehn Jahre hinweg einen einzigartigen Datensatz und neue Erkenntnisse zur alternden Bevölkerungsgruppe der Schweizer Justizanstalten geschaffen. Während zwei vom SNF-finanzierten Grossprojekten wurden die psychischen, physischen und sozialen Bedürfnissen der älteren inhaftierten Bevölkerung untersucht. Diese äusserst wichtigen Analysen wurden bereits in internationalen Wissenschaftszeitschriften publiziert. Nun soll dieses Wissen auch der Allgemeinbevölkerung zugänglich gemacht werden.

Mit schriftlichen, visuellen und auditiven Medien vermitteln wir unser Expertenwissen an Schüler, Studenten, Gefängnispersonal, medizinisches Personal sowie der allgemeinen Öffentlichkeit. Eine Fotowanderausstellung wird zum Zentrum für verschiedene Workshops und Podiumsdiskussionen. Weiterhin wird mit einer Sonderausgabe des Magazins zum Straf- und Massnahmenvollzug vom Bundesamt für Justizvollzug (#prison-info) ein Wissenshandbuch zum «Altern im Gefängnis» geschaffen. Dies wird online und auf Papier für Angestellte des Schweizer Gefängnissystems, Besucher der Fotoausstellung sowie der interessierten Öffentlichkeit zugänglich sein. Schliesslich wird ein übersichtlicher Flyer mit den wichtigsten Informationen in Kürze, spezifisch für die älteren inhaftierten Personen, geschaffen.

Dieses Öffentlichkeitsprojekt bringt ein stilles, aber hoch aktuelles Thema der breiten Öffentlichkeit zum Anfassen nahe. Mit unserem immensen Wissensfundus und dem kritischen Austausch mit Experten sowie Laien möchten wird die Auseinandersetzung mit diesem vernachlässigten Thema fördern. Dies, um Wissen über diejenigen zu verbreiten, die unter uns leben, aber unsichtbar sind.

Die Fotowanderausstellung zu ‘Altern im Gefängnis’

29.03. - 05.04. 2024 - Schloss Lenzburg

15.04. - 30.04. 2024 - Konferenz Schweizer Gefängnisärzte

13.05. - 23.05. 2024 - Zürcher Gemeinschaftszentren

23.05. - 13.06. 2024 - Haute école de santé Genève

16.10. - 06.11. 2024 - FHNW Muttenz

Der Fotograf

Der Basler Fotograf Peter Schulthess entdeckte zufällig vor über 20 Jahren fotografisch die Welt hinter Gittern, mit ihrer eigenen Architektur, Abläufen und Eigenheiten. Er begann, sich mit dem Thema Justizvollzug grundlegend auseinanderzusetzen und schnell entwickelte sich daraus eine Eigendynamik: mehrere Bildbände, Fotoausstellungen und Fachbücher waren die Folgen. Seine Bilder erscheinen regelmässig z.B. im #prison-info des Bundesamtes für Justiz.

#prison-info

www.prison.photography

www.prisonphotoproject.pt

INtegrating loneliness mitigation measures in pandemic management plans: an interdisCiplinary in-depth expLoration of psychologically and ethically sUitable interventions to DecreasE social isolation [INCLUDE]

Research Project | 7 Project Members

Project description

It is widely acknowledged that the Covid-19 pandemic, and successive Coronavirus-related restriction measures, have caused serious disruption to ordinary lives and a deterioration in public mental health. Apart from illness and death, a distinctive mark of the pandemic has been disrupted social interactions, increasing social isolation and loneliness. Mental health consequences varied widely and were significantly dependent on an individual's unique social context. While the National COVID-19 Science Task Force (NCS-TF) proposed already in June 2020 that mitigation measures for main stress factors should be included among pandemic management plans (PMPs), in-depth research on concrete measures and on the ethical balancing between prevention of mental health problems versus prevention of virus spread remains scarce.

Given the high diversity of how people cope with social isolation, there has recently been a growing recognition that the concept of loneliness captures best the difference between being alone versus lonely, and that loneliness and its mitigation (during and beyond pandemics) need to be at the center of much needed further research. Already before the pandemic, globally, between one fifth and a third of the world suffered from loneliness. In 2005, 26% of the Swiss population reported feeling lonely and by 2017 the figure had increased to 38% (above the global average of 33%). It is well established that loneliness is a serious health risk that affects both psychological and physical health.

There is a vital need to include loneliness prevention and alleviation interventions (LPAIs) in PMPs. To do so requires not only thorough knowledge about feasible and available measures and their usefulness, but also a well-argued and well communicated psychologically and ethically sound balancing between measures, especially those measures that may alleviate isolation, but at the same time increase virus spreading. Taking loneliness into account in future PMPs will reduce the harmful psychological, physical and behavioral effects of social isolation measures, increase individual and social welfare, and enable more transparent and just strategies to reduce the burden associated with pandemics.

Objectives and study parts

We will use a mixed methods approach to fill the existing research gap. The aim is to provide an in-depth exploration into the experiences of people affected by loneliness in order to identify types and justifications of loneliness prevention and alleviation interventions that can inform PMPs.

UZH Öffentlichkeitsanlass 2023 - Vortrag Prof. Dr. Bernice Elger

Link zu weiteren Informationen

The use of knowledge and data in an AI enabled world. Considerations for the future health sector regarding ethics, digital divide implications and prosperity

Research Project | 2 Project Members

This research project is a first step towards a larger goal to understand in more depth what is required structurally to form the right policy incentives under UN frameworks to unlock value in the health sector with respect to sharing of data, algorithms and capabilities for the broader good, particularly focusing on high-impact Artificial Intelligence (AI) use-cases. One proposition to achieve this is using the UN Guiding Principles on Business on Human Rights as basis for policy recommendations, and further strengthening the moral foundation by investigating biomedical ethics related questions. Also, current ongoing discussions with regards to Sustainable Development Goals (SDGs) in the pharmaceutical sector are indicating that corporations are particularly challenged with Social- & Governance-Scoring related questions, and investors expressed worries that their portfolio companies might will face headwinds in sustaining their legal and social license to operate in the long-run. In this regard, for instance, one point of criticism from policy makers is the concentration of extraordinary AI capabilities among a few large and/or specialized corporations, besides other ethical issues that impact societies at large. We believe that business models, AI ethics, financing and policy related questions for the health sector are interwoven and require a holistic approach to converge to a common agreement between various stakeholders, and that international UN frameworks and institutions could provide a platform to discuss the right incentive mechanisms with regards to digital governance, achieving the ultimate goal for better common goods outcomes.

Implementing 3Rs in Switzerland: an interdisciplinary in-depth exploration of barriers and facilitators [Implement-3R]

Research Project | 10 Project Members

The 3R principles and regulation of animal research The use of animals in biomedical and other research presents an ethical dilemma: we do not want to lose scientific benefits, nor do we want to cause laboratory animals to suffer". In Switzerland, the majority of animals (64%) is used in fundamental research and a minority (ca. 20%) are used for developing and testing pharmaceutical and chemical products. The 3R-strategies ("replace, reduce, refine") are "today widely accepted by scientists as a moral obligation to treat animals humanely and if possible to use alternative methods in experiments". The national and international regulatory framework concerning the use of animals for research stipulates adherence to the 3R principles[3-5]. In addition, Swiss law requires researchers to demonstrate a favourable harm-benefit ratio to justify animal experiments[6, 7]. There is an ongoing discussion in the fields of ethics, law and science concerning the interpretation of the 3Rs and harm-benefit analysis. Eminent ethicists have recently proposed a more elaborated, argued way how to balance social benefit and animal welfare in this context.

3R-sTrategies and Harm-benefIt analysis

Research Project | 6 Project Members

Background: The law requires scientists to argue that the 3Rs (replacement, reduction, refinement) have been maximized, i.e. that the same benefits could not have been achieved with lower impact on animal welfare. Guidelines developed by the Swiss Academies of Arts and Sciences explain how scientists need to fill in the required forms and to carry out harm-benefit-analysis (HBA). The guidelines refer to the instrumental and goal-related necessity of experiments, the classification of harms, as well as to the "legitimate interests of society" defined by Art. 137 of the Animal Protection Ordinance. Whether a particular experiment is acceptable is typically evaluated on a case-by-case basis and needs to be approved by a cantonal animal ethics committee (AEC). The Swiss guidelines don't provide specific orientation (e.g. concrete case examples) which types of balancing of interests or cut-off points are considered acceptable. International studies show considerable inconsistency as to how AECs and their individual members evaluate animal protocols. As long as inconsistencies remain poorly understood and opaque, they can be a source of decreased confidence of society in the decision-making process. Studies have shown that limited openness surrounding animal research undermines public trust. Transparency, on the contrary, improves public perceptions. A broader discussion of cases will bring transparency to the context of public debate and advance ethically sound, consistent decision-making. Objectives and methods: 1. Identify strategies designed to improve consistency of research project evaluations and assess critically how they integrate the 3Rs with HBA: Carry out a literature review and ethical analysis on decision-making aids that have been proposed (I) to evaluate and integrate multiple-stakeholder views in decision-making and (II) to promote systematic, accountable practice for HBA by AECs. As these aids - discourse or metric models - have been predominantly developed in the EU or North America, we will examine to which extent they are useful and appropriate in the Swiss legal and administrative context. 2. Obtain novel Swiss comparative qualitative and quantitative data on how and why the public (using clickworkers, n=1000) and relevant stakeholders (see 2a.) make decisions concerning ethical acceptability of a selection of realistic and concrete animal experiments by putting them in the hypothetical role of AEC members that decide on acceptance or rejection of these experiments and making them explain the reasons for their decisions. The cases will be first evaluated by an expert "gold standard" (ethicists and scientists). 2a. Understand factors that influence decision making (role and understanding of the 3Rs, weighing of interests, emotional or other psychological factors, influence of decision-aids identified in 1.) and test decision tipping points by using a convergent parallel mixed methods design (questionnaires, focus groups, participatory multiple-criteria decision analysis [MCDA]). We will compare decision making of the public with that of groups that are likely to benefit (patients, n=200), and actors involved in animal research and its ethical approval (100 junior and 100 senior scientists, 50 AEC members and cantonal administrators); 800 students (psychology, biology, pharmaceutical sciences) from 4 universities (Basel, Lausanne, Fribourg, EPFL) are included to test the influence of teaching interventions. 2b. Use these insights into the decision-making process to identify barriers to appropriate 3R and HBA understanding and implementation in different stakeholder groups. 2c. Develop innovative methods of teaching (e.g. mock AEC settings involving students as AEC members integrating different decision-aids resulting from step 1., see above) and test the influence of teaching on decision making. 3. Combine results from 1. and 2. to foster participatory decision making. The aim is to promote increased knowledge and transparent dialogue in different stakeholder groups in Swiss society about consistent ways to implement the 3Rs and weighing of interests, based on empirical findings and related to concrete cases. Assemble a collection of case examples (made available online) where arguments of the gold standard are explained and compared to findings from the empirical surveys. Importance and benefits: This interdisciplinary project fills a highly important theoretical and practical research gap concerning decision making about which animal experiments are ethically acceptable. It is of high value for several national and international academic debates, as well as of direct practical value for Swiss stakeholders as it advances not only understanding of the 3Rs and HBA, but also their implementation. By putting participants in the role of hypothetical AEC members the empirical part functions as participatory educational intervention that increases transparency and ethical reflection in Switzerland.

Role of plain language materials in democratizing access to medical research data for patients⁄caregivers and lay public

Research Project | 3 Project Members

Role of Plain Language Materials in Democratizing Access to Medical Research Data for Patients/Caregivers and Lay Public Background: The primary purpose of clinical trials is to evaluate the risk:benefit profile of any investigational therapies/products/devices before making the most effective therapies/modalities available for wider use. Consequently, access to clinical trial data is restricted to regulators for drug review/approval process, to payers for reimbursement review process, and to physicians who are the prescribers. Nevertheless, there has been a growing demand for access to medical research data for a wider stakeholder group beyond the scientific community, such as patients/caregivers and lay public, who are the eventual end-users of these approved therapies. While the focus on making patient-level data accessible to the research community has gained momentum, the needs of the wider non-scientific stakeholder group remain largely unmet. This group can benefit significantly from plain language materials that are accessible, accurate, and easy to understand. This will not only allow patients/caregivers to participate in shared decision-making for their disease management, equip lay public to identify/question misinformation but also increase inclusiveness/equity in healthcare access. Research questions: (1) What barriers exist in the current settings that impede access to latest medical research (clinical trial data) in plain language, among patients/caregivers and lay public? (2) What formats of plain language materials and dissemination channels can enable timely and wider dissemination of accurate and easy-to-understand medical research?

EXPLOR3R: Exploring 3R with experimental ethics

Research Project | 6 Project Members

Background and rationale

While there is a considerable body of literature on 3R, its application in practice, and its connection to professional opinion, no project has used experimental ethics to explore how scientists, other animal workers or members of the public perceive the ethics of 3R. Overall objective and specific aims If 3R is to remain fit for purpose for the 21st century, a re-assessment of its ethical foundations, application and scope is essential. Such a re-assesssment cannot be purely theoretical or purely empirical in nature, but must also challenge all the assumptions made in the development and use of 3R. The EXPLOR3R project aims to provide this essential re-evaluation of these aspects of 3R using the methods of experimental ethics (x-ethics).

Methods

The project will use a mixed-methods approach with three main phases: two series of qualitative interviews with scientists, other animal workers and the public in the first phase, two large quantitative surveys in the second phase, and the parallel development of an x-ethical framework for 3R and the piloting of an x-ethics tool for teaching the ethics of 3R to citizens and scientists in the third phase. In each of these phases, the foundations, application and scope of 3R will be investigated along with participants' more general views on animals. As part of the growing discipline of experimental philosophy (x-phil), experimental ethics uses thought experiments (scenarios) to challenge participants to (re-) evaluate their moral intuitions and establish whether they have a sound foundation or are the result of biases or other factors (see detailed description below).

Results and Impact

By providing a fundamental and comprehensive ethical re-evaluation of the foundations, application and scope of 3R among scientists, other animal workers and members of the public, EXPLOR3R will future-proof the paradigm, ensuring that it remains aligned with key reflective ethical values rather than intuitive reflexive thinking. It will also ensure that future citizens, scientists and other animal workers will remain sensitized to key issues in animal ethics through the development of x-ethics educational tools. EXPLOR3R will be a major contribution to the scientific literature, but also to the philosophical and bioethical literature as no experimental philosophy project has yet explored the ethics of 3R.

Evaluating parent perceptions, economic burden and the impact of Online Coaching Interventions for Parents of Children Diagnosed with the 22ql 1 Deletion Syndrome [eCARE-22ql 1]

Research Project | 6 Project Members

Decision making in times of scarce resources: A mixed-method study

Research Project | 5 Project Members

The COVID-19 pandemic has drastically changed our world and caused huge loss of lives and resources. As of August 22, 2021, over 212 million persons have been infected in 223 countries and there have been more than 4.4 million deaths. Among those most affected are older persons, and research has repeatedly shown that older age and comorbidity are major risk factors for severe complications and mortality. Healthcare structures worldwide faced dire situations of resource scarcity in light of the unprecedented pace at which the illness spread. Triage guidelines were issued to help healthcare workers decide on the best use of scarce resources (e.g. ICU beds, ventilators). However, much less attention was given to drafting guidance on prehospital management under scarcity. There is evidence in Switzerland as well as worldwide that prehospital approaches used some forms of triage either spontaneously or in a more or less planned way, creating ethically questionable disparities. This project fills an important existing research gap: given the disproportionate burden of mortality and morbidity carried by the elderly population, it is important to learn (1) about their experiences and perspectives concerning seeking and receiving healthcare in times of scarce resources, and (2) the perspectives of professionals who took care of these vulnerable patients and had to make relevant decisions. Survey methodology - Objective A. We will gather solid data from the perspectives of patients (65 years) seeking care in Geriatrics hospitals/departments in Basel, Lausanne, Zurich and Geneva. The survey will mostly include closed-ended questions evaluating their satisfaction with medical care received during their current in-patient stay; whether they feared seeking treatment and for what reasons (e.g. fear of reduced quality of care); whether they made advance directives; and include a series of short case examples to understand their perspectives related to resource allocation (including prehospital triage). Qualitative Interviews - Objective B. Study participants for this part of the project will include the variety of involved professionals as we intend to capture broad experiences to fully understand how the organization of care for older persons took place during the pandemic in the four cantons where the organization of nursing homes varies. A maximum variation sample of 15 participants from each canton will be recruited, totaling 60 participants for the project. During the interviews, we will, for example, explore the challenges that they faced (or not) in caring for older patients/residents during the different pandemic waves, what has been learned since then to prepare for upcoming waves, decisions that were taken to address situations of resource scarcity including prehospital triage and prehospital care decisions, advance care planning, how guidelines related to these decisions were made and communicated. Medical-ethical analysis - Objective C. We will carry out an in-depth medical-ethical analysis based on existing national and international prehospital triage guidelines. The results from this review will be confronted with our findings from A. and B. relevant to pre-hospital ethical decisions, followed by in-depth multidisciplinary discussions with concerned stakeholders. Our medical-ethical analysis will help issue ethical recommendations to be discussed as well with members of the SAMW Central ethics committee (ZEK) for needed next steps in Switzerland.