Solidarity during the COVID-19 pandemic: evidence from a nine-country interview study in Europe.

Calls for solidarity have been an ubiquitous feature in the response to the COVID-19 pandemic. However, we know little about how people have thought of and practised solidarity in their everyday lives since the beginning of the pandemic. What role does solidarity play in people's lives, how does it relate to COVID-19 public health measures and how has it changed in different phases of the pandemic? Situated within the medical humanities at the intersection of philosophy, bioethics, social sciences and policy studies, this article explores how the practice-based understanding of solidarity formulated by Prainsack and Buyx helps shed light on these questions. Drawing on 643 qualitative interviews carried out in two phases (April-May 2020 and October 2020) in nine European countries (Austria, Belgium, France, Germany, Ireland, Italy, The Netherlands, German-speaking Switzerland and the UK), the data show that interpersonal acts of solidarity are important, but that they are not sustainable without consistent support at the institutional level. As the pandemic progressed, respondents expressed a longing for more institutionalised forms of solidarity. We argue that the medical humanities have much to gain from directing their attention to individual health issues, and to collective experiences of health or illness. The analysis of experiences through a collective lens such as solidarity offers unique insights to understandings of the individual and the collective. We propose three essential advances for research in the medical humanities that can help uncover collective experiences of disease and health crises: (1) an empirical and practice-oriented approach alongside more normative approaches; (2) the confidence to make recommendations for practice and policymaking and (3) the pursuit of cross-national and multidisciplinary research collaborations.

The social and socio-political embeddedness of COVID-19 vaccination decision-making: A five-country qualitative interview study from Europe.

The uptake ofCOVID-19 vaccines has varied considerably across European countries. This study investigates people's decision-making process regarding vaccination by analyzing qualitative interviews (n = 214) with residents from five European countries: Austria, Germany, Italy, Portugal, and Switzerland. We identify three factors that shape vaccination decision-making: individual experiences and pre-existing attitudes towards vaccination, social environment, and socio-political context. Based on this analysis, we present a typology of decision-making regarding COVID-19 vaccines, where some types present stable stances towards vaccines and others change over time. Trust in government and relevant stakeholders, broader social factors, and people's direct social environment were particularly relevant to these dynamics. We conclude that vaccination campaigns should be considered long-term projects (also outside of pandemics) in need of regular adjustment, communication and fine-tuning to ensure public trust. This is particularly pertinent for booster vaccinations, such as COVID-19 or influenza.

Democratic research: Setting up a research commons for a qualitative, comparative, longitudinal interview study during the COVID-19 pandemic.

The sudden and dramatic advent of the COVID-19 pandemic led to urgent demands for timely, relevant, yet rigorous research. This paper discusses the origin, design, and execution of the SolPan research commons, a large-scale, international, comparative, qualitative research project that sought to respond to the need for knowledge among researchers and policymakers in times of crisis. The form of organization as a research commons is characterized by an underlying solidaristic attitude of its members and its intrinsic organizational features in which research data and knowledge in the study is shared and jointly owned. As such, the project is peer-governed, rooted in (idealist) social values of academia, and aims at providing tools and benefits for its members. In this paper, we discuss challenges and solutions for qualitative studies that seek to operate as research commons.

Anticipating hopes, fears and expectations towards COVID-19 vaccines: A qualitative interview study in seven European countries.

Vaccine uptake is essential to managing the ongoing COVID-19 pandemic, and vaccine hesitancy is a persistent concern. At the same time, both decision-makers and the general population have high hopes for COVID-19 vaccination. Drawing from qualitative interview data collected in October 2020 as part of the pan-European SolPan study, this study explores early and anticipatory expectations, hopes and fears regarding COVID-19 vaccination across seven European countries. We find that stances towards COVID-19 vaccines were shaped by personal lived experiences, but participants also aligned personal and communal interests in their considerations. Trust, particularly in expert institutions, was an important prerequisite for vaccine acceptance, but participants also expressed doubts about the rapid vaccine development process. Our findings emphasise the need to move beyond the study of factors driving vaccine hesitancy, and instead to focus on how people personally perceive vaccination in their particular social and political context.

Practices and Attitudes of Bavarian Stakeholders Regarding the Secondary Use of Health Data for Research Purposes During the COVID-19 Pandemic: Qualitative Interview Study.

BACKGROUND: The COVID-19 pandemic is a threat to global health and requires collaborative health research efforts across organizations and countries to address it. Although routinely collected digital health data are a valuable source of information for researchers, benefiting from these data requires accessing and sharing the data. Health care organizations focusing on individual risk minimization threaten to undermine COVID-19 research efforts, and it has been argued that there is an ethical obligation to use the European Union's General Data Protection Regulation (GDPR) scientific research exemption during the COVID-19 pandemic to support collaborative health research. OBJECTIVE: This study aims to explore the practices and attitudes of stakeholders in the German federal state of Bavaria regarding the secondary use of health data for research purposes during the COVID-19 pandemic, with a specific focus on the GDPR scientific research exemption. METHODS: Individual semistructured qualitative interviews were conducted between December 2020 and January 2021 with a purposive sample of 17 stakeholders from 3 different groups in Bavaria: researchers involved in COVID-19 research (n=5, 29%), data protection officers (n=6, 35%), and research ethics committee representatives (n=6, 35%). The transcripts were analyzed using conventional content analysis. RESULTS: Participants identified systemic challenges in conducting collaborative secondary-use health data research in Bavaria; secondary health data research generally only happens when patient consent has been obtained, or the data have been fully anonymized. The GDPR research exemption has not played a significant role during the pandemic and is currently seldom and restrictively used. Participants identified 3 key groups of barriers that led to difficulties: the wider ecosystem at many Bavarian health care organizations, legal uncertainty that leads to risk-adverse approaches, and ethical positions that patient consent ought to be obtained whenever possible to respect patient autonomy. To improve health data research in Bavaria and across Germany, participants wanted greater legal certainty regarding the use of pseudonymized data for research purposes without the patient's consent. CONCLUSIONS: The current balance between enabling the positive goals of health data research and avoiding associated data protection risks is heavily skewed toward avoiding risks; so much so that it makes reaching the goals of health data research extremely difficult. This is important, as it is widely recognized that there is an ethical imperative to use health data to improve care. The current approach also creates a problematic conflict with the ambitions of Germany, and the federal state of Bavaria, to be a leader in artificial intelligence. A recent development in the field of German public administration known as norm screening (Normenscreening) could potentially provide a systematic approach to minimize legal barriers. This approach would likely be beneficial to other countries.

The COVID-19 Vaccine: Trust, doubt, and hope for a future beyond the pandemic in Germany.

Public perceptions of COVID-19 vaccines are critical in reaching protective levels of herd immunity. Vaccine skepticism has always been relatively high in Germany, and surveys suggest that over the course of the pandemic, enthusiasm for the COVID-19 vaccine has dropped. Looking at the period just prior to the approval of the Pfizer/BioNTech and Moderna vaccines in Germany in the latter half of 2020, this paper aims to assess the reasons for and against COVID-19 vaccine uptake among residents of Germany, and to provide in-depth qualitative data to better understand and address concerns surrounding the safety and efficacy of a COVID-19 vaccine. Our findings indicate that there is widespread trust in German institutions and health experts to provide a safe vaccine for those who need it most. However, interviewees also point to the need for more information and the centrality of support from trusted medical authorities in making individual vaccination decisions. We also present the complexity of individual positions on vaccination, and suggest that vaccine hesitancy in relation to COVID-19 needs to be understood as a nuanced, and socially malleable, territory. This indicates that the goal of a vaccination campaign is not only achieving 'herd immunity,' but also a social endorsement of the collaborative effort that is required for a vaccine to be successful.

Value-creation in the health data domain: a typology of what health data help us do

It has become a trope to speak of the increasing value of health data in our societies. Such rhetoric is highly performative: it creates expectations, channels and justifies investments in data technologies and infrastructures, and portrays deliberations on political and legal issues as obstacles to the flow of data. Yet, important epistemic and political questions remain unexamined, such as how the value of data is created, what data journeys are envisioned by policies and regulation, and for whom data types are (intended to be) valuable. Drawing on two empirical cases, (a) interviews with physicians on the topic of digital selfcare, and (b) expectations of stakeholders on the use of Real-World Data in clinical trials, as well as existing literature, we propose a typology of what health data help us to do. This typology is intended to foster reflection about the different roles and values that data use unfolds. We conclude by discussing how regulation can better accommodate practices of valuation in the health data domain, with a particular focus on identifying regulatory challenges and opportunities for EU-level policy makers, and how Covid-19 has shed light on new aspects of each case.

Solidaristic behavior and its limits: A qualitative study about German and Swiss residents' behaviors towards public health measures during COVID-19 lockdown in April 2020.

Politicians, policymakers, and mass media alike have emphasized the importance of solidarity during the COVID-19 pandemic, calling for the need of social cohesion in society to protect risk groups and national healthcare systems. In this study, which is part of an international Consortium, we analyzed 77 qualitative interviews with members of the general public in Germany and German-speaking areas of Switzerland on solidaristic behavior and its limits during the first COVID-19 related lockdown in April 2020. We found interdependencies between the interpersonal, group, and state tiers of solidarity that offer insights into what promotes solidaristic practice and what does not. We argue that because solidarity does not have a necessary and sufficient normative value in itself, those wanting to promote solidarity need to consider these interdependencies to effectively implement policy measures. Our study shows that inter-societal solidarity was based on individual voluntary agency and promoted through recognizing a shared goal, shared values, or other communalities including group effort. It also shows that individuals held state authorities accountable for the same values and expect inter-societal reciprocity from the contractual level. Tensions between those complying or willing to follow recommendations voluntarily and those perceived as not promoting the shared goal, posed challenges for solidarity. Another challenge for solidaristic behavior was when acting in solidarity with others was in direct conflict with the needs of close ones. Our study provides a clearer picture of promoting and limiting factors concerning solidarity which is relevant when communicating health policy measures to individuals and groups.

Early Perceptions of COVID-19 Contact Tracing Apps in German-Speaking Countries: Comparative Mixed Methods Study.

BACKGROUND: The main German-speaking countries (Germany, Austria, and Switzerland) have implemented digital contact tracing apps to assist the authorities with COVID-19 containment strategies. Low user rates for these apps can affect contact tracing and, thus, its usefulness in controlling the spread of the novel coronavirus. OBJECTIVE: This study aimed to assess the early perceptions of people living in the German-speaking countries and compare them with the frames portrayed in the newspapers during the first wave of the COVID-19 pandemic. METHODS: We conducted qualitative interviews with 159 participants of the SolPan project. Of those, 110 participants discussed contact tracing apps and were included in this study. We analyzed articles regarding contact tracing apps from 12 newspapers in the German-speaking countries. RESULTS: Study participants perceived and newspaper coverage in all German-speaking countries framed contact tracing apps as governmental surveillance tools and embedded them in a broader context of technological surveillance. Participants identified trust in authorities, respect of individual privacy, voluntariness, and temporary use of contact tracing apps as prerequisites for democratic compatibility. Newspapers commonly referenced the use of such apps in Asian countries, emphasizing the differences in privacy regulation among these countries. CONCLUSIONS: The uptake of digital contact tracing apps in German-speaking countries may be undermined due to privacy risks that are not compensated by potential benefits and are rooted in a deeper skepticism towards digital tools. When authorities plan to implement new digital tools and practices in the future, they should be very transparent and proactive in communicating their objectives and the role of the technology-and how it differs from other, possibly similar, tools. It is also important to publicly address ethical, legal, and social issues related to such technologies prior to their launch.

The second pandemic: Examining structural inequality through reverberations of COVID-19 in Europe.

While everyone has been impacted directly or indirectly by the COVID-19 pandemic and the measures to contain it, not everyone has been impacted in the same way and certainly not to the same degree. Media coverage in early 2020 emphasized the "unprecedented" nature of the pandemic, and some even predicted that the virus could be a global "equalizer." Ensuing debates over how the pandemic should be handled have often hinged on oppositions between protecting health and healthcare systems versus saving livelihoods and the economy, a dichotomy that we argue is false. Drawing on 482 interviews conducted in Germany, Italy, Ireland, Austria, German-speaking Switzerland and the UK over two points in a 6-month period as part of the 'Solidarity in times of Pandemics Research Consortium' (SolPan), we illustrate the ways that oppositions posed between saving lives or saving livelihoods fail to capture the entangled, long-standing nature of structural inequalities that have been revealed through the pandemic. Health- and wealth-related inequalities intersect to produce the "second pandemic," a term used by a research participant to explain the other forms of devastation that run in parallel with virus. Our findings thus complicate such dichotomies through a qualitative understanding of the pandemic as a lived experience. The pandemic emerges as a critical juncture which, in exacerbating these existing structural inequalities, also poses an opportunity to work to better resolve them.

Impact of COVID-19 on patient health and self-care practices: a mixed-methods survey with German patients.

OBJECTIVE: This study aimed to examine German patients': (1) self-estimation of the impact of the pandemic on their health and healthcare; and (2) use of digital self-care practices during the pandemic. DESIGN: Cross-sectional mixed-methods survey. SETTING AND PARTICIPANTS: General practice patients from four physicians' offices located in urban and rural areas of Bavaria, Germany, between 21 July 2020 and 17 October 2020. A total of 254 patients participated (55% response rate); 57% (262 of 459) identified as female and participants had an average age of 39.3 years. Patients were eligible to participate if they were 18 years or older and spoke German, and had access to the internet. RESULTS: (1) Healthcare for patients was affected by the pandemic, and the mental health of a small group of respondents was particularly affected. The risk of depression and anxiety disorder was significantly increased in patients with quarantine experience. (2) Self-care practices have increased; more than one-third (39%) of participants indicated that they started a new or additional self-care practice during the pandemic, and about a quarter (23%) of patients who were not previously engaged in self-care practices started new self-care activities for the first time; however, such practices were not necessarily digital. CONCLUSIONS: Further investigation is required to understand the relationship between digital self-care and public health events such as the COVID-19 pandemic, and to develop strategies to alleviate the burden of the quarantine experience for patients.

Motivations and Limits for COVID-19 Policy Compliance in Germany and Switzerland.

BACKGROUND: In contrast to neighboring countries, German and Swiss authorities refrained from general curfews during the first pandemic wave in spring 2020, calling for solidarity and personal responsibility instead. Using a qualitative methodology, this study aims to explore why people in Germany and Switzerland were motivated to comply with policy measures during the first wave of the coronavirus disease 2019 (COVID-19) pandemic, and what factors hindered or limited their motivation. While quantitative surveys can measure the level of compliance, or broadly ask what motives people had for compliance, we here strive to explain why and how these motives lead to compliance. METHODS: This publication has been made possible by the joint work of the members of the "Solidarity in times of pandemics" (SolPan) research commons. Seventy-seven semi-structured qualitative interviews were conducted with members of the general public in Germany (n = 46) and the German-speaking part of Switzerland (n = 31) in April 2020. Interviews were transcribed and analyzed following a grounded theory approach. RESULTS: Three themes were identified that summarize factors contributing to compliant or noncompliant behavior. (1) Social cohesion was, on the one hand, an important motivator for compliance, but at the same time related to conflicting needs, illustrating the limits of compliance. (2) Consequences were considered on both the individual level (eg, consequences of individual infection) and societal level (eg, the societal and economic consequences of restrictions). (3) While for some participants following the rules was perceived as a matter of principle, others stressed the importance of making their own risk assessment, which was often associated with with a need for evidence on the effectiveness and reasons behind measures. CONCLUSION: A variety of motives contribute to COVID-19 related compliance. Authorities should seek to address these multi-faceted aspects to support motivation for compliance in a large proportion of the population.