Practices and Barriers in Developing and Disseminating Plain-Language Resources Reporting Medical Research Information: A Scoping Review.

BACKGROUND: The intent of plain-language resources (PLRs) reporting medical research information is to advance health literacy among the general public and enable them to participate in shared decision-making (SDM). Regulatory mandates coupled with academic and industry initiatives have given rise to an increasing volume of PLRs summarizing medical research information. However, there is significant variability in the quality, format, readability, and dissemination channels for PLRs. In this scoping review, we identify current practices, guidance, and barriers in developing and disseminating PLRs reporting medical research information to the general public including patients and caregivers. We also report on the PLR preferences of these intended audiences. METHODS: A literature search of three bibliographic databases (PubMed, EMBASE, Web of Science) and three clinical trial registries (NIH, EMA, ISRCTN registry) was performed. Snowball searches within reference lists of primary articles were added. Articles with PLRs or reporting topics related to PLRs use and development available between January 2017 and June 2023 were identified. Evidence mapping and synthesis were used to make qualitative observations. Identified PLRs were quantitatively assessed, including temporal annual trends, availability by field of medicine, language, and publisher types. RESULTS: A total of 9116 PLRs were identified, 9041 from the databases and 75 from clinical trial registries. The final analysis included 6590 PLRs from databases and 72 from registries. Reported barriers to PLR development included ambiguity in guidance, lack of incentives, and concerns of researchers writing for the general public. Available guidance recommendations called for greater dissemination, increased readability, and varied content formats. Patients preferred visual PLRs formats (e.g., videos, comics), which were easy to access on the internet and used short jargon-free text. In some instances, older audiences and more educated readers preferred text-only PLRs. Preferences among the general public were mostly similar to those of patients. Psychology, followed by oncology, showed the highest number of PLRs, predominantly from academia-sponsored research. Text-only PLRs were most commonly available, while graphical, digital, or online formats were less available. Preferred dissemination channels included paywall-free journal websites, indexing on PubMed, third-party websites, via email to research participants, and social media. CONCLUSIONS: This scoping review maps current practices, recommendations, and patients' and the general public's preferences for PLR development and dissemination. The results suggest that making PLRs available to a wider audience by improving nomenclature, accessibility, and providing translations may contribute to empowerment and SDM. Minimizing variability among available guidance for PLR development may play an important role in amplifying the value and impact of these resources.

Plain-language resources (PLRs) can help people understand medical research information. This will allow them to make informed decisions about their health. However, PLRs vary in quality, format, and ways in which they are shared. In this study, researchers looked at how PLRs are made and publicly shared. They also studied what makes PLRs useful for the public and patients. Creating PLRs is not easy because of unclear guidelines on writing for the public. Using different formats and languages can make PLRs readable. Patients preferred PLRs as videos and comics. Older and educated readers liked text-only PLRs. The fields of psychology and oncology had the highest number of PLRs. Text-only PLRs were more common than digital or online formats. PLRs should be easily and freely accessible. Open-access journal websites, PubMed, third-party websites, email, and social media can be used to share PLRs. This study showed that PLRs can be helpful, but there are challenges in creating and sharing them. Good PLRs can inform patients and help them make better health-related decisions.

Animal Research Regulation: Improving Decision-Making and Adopting a Transparent System to Address Concerns around Approval Rate of Experiments.

The use of nonhuman animals in biomedical research is regulated under stringent conditions, not only in response to societal attitudes towards animal experimentation but also because ethical responsibility in scientific research requires researchers and veterinarians to be more invested and aim to improve the welfare of animals used for experiments. Analyses of animal research oversight reveal the frequent approval of experiments, and the approval of some experiments has raised and continues to raise public concerns. Societal compliance is required for a consensus-based approach to animal research policy, prompting the need to have transparent discussions about oversight and the frequency of approvals. We discuss how frequent approval may be perceived and why it seems problematic from a societal perspective: the regulatory process exists to approve only legitimate experiments. Although some experiments remain unacceptable irrespective of their harm-benefit ratios, almost all experiments are approved. We explain some possible legitimate reasons for frequent approval and how the review process could be leading to the approval of illegitimate studies. To ensure transparency and improve public trust and understanding of oversight, we propose the adoption of a platform to inform society about how unethical experiments are screened out.

Conventional and assisted suicide in Switzerland: Insights into a divergent development based on cancer-associated self-initiated deaths.

BACKGROUND: We tested the hypothesis of supporters of assisted dying that assisted suicide (AS) might be able to prevent cases of conventional suicide (CS). METHODS: By using data from the Federal Statistical Office, we analyzed the long-term development of 30,756 self-initiated deaths in Switzerland over a 20-year period (1999-2018; CS: n = 22,018, AS: n = 8738), focusing on people suffering from cancer who died from AS or CS. RESULTS: While cancer was the most often listed principal disease for AS (n = 3580, 41.0% of AS cases), cancer was listed in only a small minority of CS cases (n = 832, 3.8% of CS cases). There was a significant increase in the absolute number of cancer-associated AS cases: comparing four 5-year periods, there was approximately a doubling of cases every 5 years (1999-2003: n = 228 vs.2004-2008: n = 474, +108% compared with the previous period; 2009-2013: n = 920, +94%; 2014-2018: n = 1958, +113%). The ratio of cancer-associated AS in relationship with all cancer-associated deaths increased over time to 2.3% in the last observation period (2014-2018). In parallel, the numbers of cancer-associated CS showed a downward trend only at the beginning of the observation period (1999-2003, n = 240 vs. 2004-2008, n = 199, -17%). Thereafter, the number of cases remained stable in the subsequent 5-year period (2009-2013, n = 187, -6%), and increased again toward the most recent period (2014-2018, n = 206, +10%). CONCLUSION: The assumption that, with the increasingly accessible option of AS for patients with cancer, CS suicide will become "superfluous" cannot be confirmed. There are strong reasons indicating that situations and circumstances of cancer-associated CS are different from those for cancer-associated AS.

Sensing the (digital) pulse. Future steps for improving the secondary use of data for research in Switzerland.

Introduction: Ensuring that the health data infrastructure and governance permits an efficient secondary use of data for research is a policy priority for many countries. Switzerland is no exception and many initiatives have been launched to improve its health data landscape. The country now stands at an important crossroad, debating the right way forward. We aimed to explore which specific elements of data governance can facilitate - from ethico-legal and socio-cultural perspectives - the sharing and reuse of data for research purposes in Switzerland. Methods: A modified Delphi methodology was used to collect and structure input from a panel of experts via successive rounds of mediated interaction on the topic of health data governance in Switzerland. Results: First, we suggested techniques to facilitate data sharing practices, especially when data are shared between researchers or from healthcare institutions to researchers. Second, we identified ways to improve the interaction between data protection law and the reuse of data for research, and the ways of implementing informed consent in this context. Third, we put forth ideas on policy changes, such as the steps necessary to improve coordination between different actors of the data landscape and to win the defensive and risk-adverse attitudes widespread when it comes to health data. Conclusions: After having engaged with these topics, we highlighted the importance of focusing on non-technical aspects to improve the data-readiness of a country (e.g., attitudes of stakeholders involved) and of having a pro-active debate between the different institutional actors, ethico-legal experts and society at large.

Crime hierarchy, victimization and coping results of a qualitative study on the older incarcerated Person's mental health in Switzerland.

BACKGROUND: Incarcerated persons rank themselves according to the crime they have committed. Due to which, those lower in this hierarchy (e.g., paedophiles) are bullied. The goal of this paper was to better knowledge on older incarcerated adults' experiences of crime and social hierarchy in prisons. METHODS: Our results comprise data from 50 semi-structured interviews with older incarcerated persons. Data was assessed following thematic analysis. RESULTS: Our research showed that crime hierarchy occurs in prison and is recognized by older incarcerated individuals. Also, a social hierarchy based on various characteristics (e.g., ethnicity, education, language, mental health) is established within detention centres. This hierarchy is put forth by all persons deprived of liberty, but mostly by the ones at the bottom of the crime hierarchy, thus using it to portray themselves as better human beings than other incarcerated adults. They use the social hierarchy to cope with bullying whilst exhibiting coping mechanisms, such as the narcissistic facade. A concept we put forth as a novel idea. DISCUSSION: Our results show that crime hierarchy prevails in prison. Also, we explain the social hierarchy based on ethnicity, education, and other characteristics. Hence, being a victim of bullies, make lower-ranked (on the crime hierarchy) persons resort to social hierarchy to portray themselves as better individuals. This should not be considered as a personality disorder, but rather a narcissistic facade.

Mapping ethical issues in the use of smart home health technologies to care for older persons: a systematic review.

BACKGROUND: The worldwide increase in older persons demands technological solutions to combat the shortage of caregiving and to enable aging in place. Smart home health technologies (SHHTs) are promoted and implemented as a possible solution from an economic and practical perspective. However, ethical considerations are equally important and need to be investigated. METHODS: We conducted a systematic review according to the PRISMA guidelines to investigate if and how ethical questions are discussed in the field of SHHTs in caregiving for older persons. RESULTS: 156 peer-reviewed articles published in English, German and French were retrieved and analyzed across 10 electronic databases. Using narrative analysis, 7 ethical categories were mapped: privacy, autonomy, responsibility, human vs. artificial interactions, trust, ageism and stigma, and other concerns. CONCLUSION: The findings of our systematic review show the (lack of) ethical consideration when it comes to the development and implementation of SHHTs for older persons. Our analysis is useful to promote careful ethical consideration when carrying out technology development, research and deployment to care for older persons. REGISTRATION: We registered our systematic review in the PROSPERO network under CRD42021248543.

Artificial intelligence and the doctor-patient relationship expanding the paradigm of shared decision making.

Artificial intelligence (AI) based clinical decision support systems (CDSS) are becoming ever more widespread in healthcare and could play an important role in diagnostic and treatment processes. For this reason, AI-based CDSS has an impact on the doctor-patient relationship, shaping their decisions with its suggestions. We may be on the verge of a paradigm shift, where the doctor-patient relationship is no longer a dual relationship, but a triad. This paper analyses the role of AI-based CDSS for shared decision-making to better comprehend its promises and associated ethical issues. Moreover, it investigates how certain AI implementations may instead foster the inappropriate paradigm of paternalism. Understanding how AI relates to doctors and influences doctor-patient communication is essential to promote more ethical medical practice. Both doctors' and patients' autonomy need to be considered in the light of AI.

A smarter perspective: Learning with and from AI-cases.

Artificial intelligence (AI) has only partially (or not at all) been integrated into medical education, leading to growing concerns regarding how to train healthcare practitioners to handle the changes brought about by the introduction of AI. Programming lessons and other technical information into healthcare curricula has been proposed as a solution to support healthcare personnel in using AI or other future technology. However, integrating these core elements of computer science knowledge might not meet the observed need that students will benefit from gaining practical experience with AI in the direct application area. Therefore, this paper proposes a dynamic approach to case-based learning that utilizes the scenarios where AI is currently used in clinical practice as examples. This approach will support students' understanding of technical aspects. Case-based learning with AI as an example provides additional benefits: (1) it allows doctors to compare their thought processes to the AI suggestions and critically reflect on the assumptions and biases of AI and clinical practice; (2) it incentivizes doctors to discuss and address ethical issues inherent to technology and those already existing in current clinical practice; (3) it serves as a foundation for fostering interdisciplinary collaboration via discussion of different views between technologists, multidisciplinary experts, and healthcare professionals. The proposed knowledge shift from AI as a technical focus to AI as an example for case-based learning aims to encourage a different perspective on educational needs. Technical education does not need to compete with other essential clinical skills as it could serve as a basis for supporting them, which leads to better medical education and practice, ultimately benefiting patients.

United in Big Data? Exploring scholars' opinions on academic-industry partnership and the use of corporate data in digital behavioral research.

The growing amount of data produced through digital technologies holds great promise for advancing behavioral research. Scholars worldwide now have the chance to access an incredible amount of personal information, thanks to the digital trace users continuously leave behind them. Private corporations play a crucial role in this scenario as the leading collectors of data on users, thus creating new incentives for partnerships between academic institutions and private companies. Due to the concerns that academic-company partnerships might raise and the ethical issues connected with Big Data research, our study explores the challenges and opportunities associated with the academic use of corporate data. We conducted 39 semi-structured interviews with academic scholars (professors, senior researchers, and postdocs) involved in Big Data research in Switzerland and the United States. We also investigated their opinions on using corporate data for scholarly research. Researchers generally showed an interest in using corporate data; however, they coincidentally shared ethical reservations towards this practice, such as threats to research integrity and concerns about a lack of transparency of companies' practices. Furthermore, participants mentioned issues of scholarly access to corporate data that might both disadvantage the academic research community and create issues of scientific validity. Academic-company partnerships could be a positive development for the advancement of scholarly behavioral research. However, strategies should be implemented to appropriately guide collaborations and appropriate use of corporate data, like implementing updated protocols and tools to govern conflicts of interest and the institution of transparent regulatory bodies to ensure adequate oversight of academic-corporate research collaborations.

Deconstructing age(s): an analysis of the different conceptions of age as a legal criterion for access to assisted reproductive technologies.

Whether there should be restrictions for access to Assisted Reproductive Technologies (ART) is a matter of continuous medical, societal, and ethico-legal debate. One of the most controversial topics in this context is the use of parental age as a criterion to limit access to ART. Views are divided on whether there should be an upper age limit for one or both parents and on where such limits should be. Although this debate is centered around the issue of 'age' and although age-related limits are present in many legislations, the intrinsic ambiguity of the term `age' is largely overlooked. In this article, we build on gerontological, medical, and sociological literature on the concepts of 'age' and 'aging' to distinguish three conceptions of age that are relevant for ART regulation: the chronological, the biological, and the social-cultural one. Beyond mapping out these conceptions of age, we describe how they relate to ART and reproduction, and illustrate the advantages and disadvantages of relying on each of them as a basis for limiting ART access. Finally, we propose a template for defining legal age limits for ART access in the law, based on the refined understanding of the different conceptions of age that we outline and we discuss two potential objections to our proposal.

It takes a pirate to know one: ethical hackers for healthcare cybersecurity.

Healthcare cybersecurity is increasingly targeted by malicious hackers. This sector has many vulnerabilities and health data is very sensitive and valuable. Consequently, any damage caused by malicious intrusions is particularly alarming. The consequences of these attacks can be enormous and endanger patient care. Amongst the already-implemented cybersecurity measures and the ones that need to be further improved, this paper aims to demonstrate how penetration tests can greatly benefit healthcare cybersecurity. It is already proven that this approach has enforced cybersecurity in other sectors. However, it is not popular in healthcare since many prejudices still surround the hacking practice and there is a lack of education on hackers' categories and their ethics. The present analysis aims to comprehend what hacker ethics is and who ethical hackers are. Currently, hacker ethics has the status of personal ethics; however, to employ penetration testers in healthcare, it is recommended to draft an official code of ethics, comprising principles, standards, expectations, and best practices. Additionally, it is important to distinguish between malicious hackers and ethical hackers. Amongst the latter, penetration testers are only a sub-category. Acknowledging the subtle differences between ethical hackers and penetration testers allows to better understand why and how the latter can offer their services to healthcare facilities.

Bioethical Implications of Vulnerability and Politics for Healthcare in Ethiopia and The Ways Forward.

Vulnerability and politics are among the relevant and key topics of discussion in the Ethiopian healthcare context. Attempts by the formal bioethics structure in Ethiopia to deliberate on ethical issues relating to vulnerability and politics in healthcare have been limited, even though the informal analysis of bioethical issues has been present in traditional Ethiopian communities. This is reflected in religion, social values, and local moral underpinnings. Thus, the aim of this paper is to discuss the bioethical implications of vulnerability and politics for healthcare in Ethiopia and to suggest possible ways forward. First, we will briefly introduce what has been done to develop bioethics as a field in Ethiopia and what gaps remain concerning its implementation in healthcare practice. This will give a context for our second and main task - analyzing the healthcare challenges in relation to vulnerability and politics and discussing their bioethical implications. In doing so, and since these two concepts are intrinsically broad, we demarcate their scope by focusing on specific issues such as poverty, gender, health governance, and armed conflicts. Lastly, we provide suggestions for the ways forward.

Care of Older Persons in Eastern Africa: A Scoping Review of Ethical Issues.

Introduction: The aging population is rapidly increasing globally, with 80% of the older population living in low- and middle-income countries. In Eastern African countries, there exists an incongruence between readiness-economically, structurally, politically, and culturally-to create a conducive environment for healthy aging, which implies public health as well as ethical concerns. The aim of this scoping review was to explore existing evidence addressing the various ethical issues in connection with elder care in the region of Eastern Africa. Methods: We searched six databases (Africa-Wide Information, AgeLine, CINHAL, MEDLINE, APA PsycInfo, and SocINDEX) to identify peer-reviewed journal articles that could meet some eligibility criteria such as being a peer-reviewed journal article written in English, having been published in any year until July 2020, and focusing on ethical issues in the care of older people aged 60 years and older from Eastern Africa. We also searched for additional evidence in the references of included papers and web-based platforms. We included 24 journal articles and analyzed them using the inductive content analysis approach. Results: The included articles represent seven (38.9%) of the 18 countries in the Eastern African region. The articles covered six ethical concerns: lack of government attention to older persons (n = 14, 58.3%), inaccessibility of health care services (n = 13, 54.2%), loneliness and isolation (n = 11, 45.8%), gender inequalities in old age (n = 9, 37.5%), mistreatment and victimization (n = 8, 33.3%), and medical errors (n = 2, 8.3%). Conclusion: This scoping review summarized ethical issues arising in relation to providing care for older persons in the Eastern African context. In light of the rapid increase in the number of older persons in this region, it is critical for governments and responsible bodies to implement and accelerate efforts promptly to generate more evidence to inform programs and policies that improve the health and wellbeing of older persons. Further research is needed to inform global health efforts that aim at improving the lives of older persons, particularly in low- and middle-income countries. Clinical Trial Registration: https://osf.io/sb8gw, identifier: 10.17605/OSF.IO/SB8GW.

Re-focusing explainability in medicine.

Using artificial intelligence to improve patient care is a cutting-edge methodology, but its implementation in clinical routine has been limited due to significant concerns about understanding its behavior. One major barrier is the explainability dilemma and how much explanation is required to use artificial intelligence safely in healthcare. A key issue is the lack of consensus on the definition of explainability by experts, regulators, and healthcare professionals, resulting in a wide variety of terminology and expectations. This paper aims to fill the gap by defining minimal explainability standards to serve the views and needs of essential stakeholders in healthcare. In that sense, we propose to define minimal explainability criteria that can support doctors' understanding, meet patients' needs, and fulfill legal requirements. Therefore, explainability need not to be exhaustive but sufficient for doctors and patients to comprehend the artificial intelligence models' clinical implications and be integrated safely into clinical practice. Thus, minimally acceptable standards for explainability are context-dependent and should respond to the specific need and potential risks of each clinical scenario for a responsible and ethical implementation of artificial intelligence.

Precision Public Health and Structural Racism in the United States: Promoting Health Equity in the COVID-19 Pandemic Response.

The COVID-19 pandemic has revealed deeply entrenched structural inequalities that resulted in an excess of mortality and morbidity in certain racial and ethnic groups in the United States. Therefore, this paper examines from the US perspective how structural racism and defective data collection on racial and ethnic minorities can negatively influence the development of precision public health (PPH) approaches to tackle the ongoing COVID-19 pandemic. Importantly, the effects of structural and data racism on the development of fair and inclusive data-driven components of PPH interventions are discussed, such as with the use of machine learning algorithms to predict public health risks. The objective of this viewpoint is thus to inform public health policymaking with regard to the development of ethically sound PPH interventions against COVID-19. Particular attention is given to components of structural racism (eg, hospital segregation, implicit and organizational bias, digital divide, and sociopolitical influences) that are likely to hinder such approaches from achieving their social justice and health equity goals.

The devil is in the details: an analysis of patient rights in Swiss cancer registries.

Cancer registries are an important part of the public health infrastructure, since they allow to monitor the temporal trends of this illness as well as facilitate epidemiological research. In order to effectively set up such registries, it is necessary to create a system of data collection that permits to record health-related information from patients who are diagnosed with cancer. Given the sensitive nature of such data, it is debated whether their recording should be based on consent or whether alternative arrangements are possible (eg, opt-out systems where information is automatically collected but patients can later withdraw). In the recent reform of the Swiss cancer registration legislation, the lawmaker set out to implement rules about the recording of data in cancer registries that would allegedly go beyond a consent-based model, in order to balance accurate registration with respect of patient rights. However, by analysing the operational norms of the new legislation and comparing them with those of other systems, it emerges that the Swiss rules de facto closely resemble a system of registration based on informed consent-in partial contradiction with the objective pursued by the lawmaker. In this paper, we show how the details of a policy are crucial to determine its true nature and we highlight some critical elements-from an ethical standpoint-of the recently reformed Swiss policy on cancer registration.

Intentional machines: A defence of trust in medical artificial intelligence.

Trust constitutes a fundamental strategy to deal with risks and uncertainty in complex societies. In line with the vast literature stressing the importance of trust in doctor-patient relationships, trust is therefore regularly suggested as a way of dealing with the risks of medical artificial intelligence (AI). Yet, this approach has come under charge from different angles. At least two lines of thought can be distinguished: (1) that trusting AI is conceptually confused, that is, that we cannot trust AI; and (2) that it is also dangerous, that is, that we should not trust AI-particularly if the stakes are as high as they routinely are in medicine. In this paper, we aim to defend a notion of trust in the context of medical AI against both charges. To do so, we highlight the technically mediated intentions manifest in AI systems, rendering trust a conceptually plausible stance for dealing with them. Based on literature from human-robot interactions, psychology and sociology, we then propose a novel model to analyse notions of trust, distinguishing between three aspects: reliability, competence, and intentions. We discuss each aspect and make suggestions regarding how medical AI may become worthy of our trust.

Challenges in providing ethically competent health care to incarcerated older adults with mental illness: a qualitative study exploring mental health professionals' perspectives in Canada.

BACKGROUND: The population of incarcerated older adults is the fastest growing demographic in prisons. Older persons in custody have poorer health as compared with those in the community. The unmet and complex health care needs of incarcerated older adults with mental illness raise justice, safety, dignity and fairness in care as ethical concerns. As there exists research gap to better understand these concerns, the current study aimed at exploring the perspectives of mental health professionals on challenges in delivering ethically competent care to mentally ill incarcerated older adults in Canada. METHODS: Thirty-four semi-structured interviews were conducted between August 2017 and November 2018 with prison mental health professionals in Canada who were selected using purposive and convenience sampling techniques. The audio recorded interviews were transcribed verbatim and analysed inductively to generate themes. RESULTS: The results were distilled into three main categories and seven subcategories that related to ethical issues in the provision of health care for mentally ill incarcerated older adults. The main categories included imprisoned older persons with special care needs, lack of resources, and the peer-support program. CONCLUSIONS: Results of this study showed that existing practices of care of mentally ill incarcerated older adults are characterised by challenges that increase their vulnerability to worse health conditions. It is imperative for local authorities, policy makers and representatives to prepare for and respond to the challenges that compromise ethically competent health care for, and healthy ageing of, mentally ill incarcerated older adults.

Individual notions of fair data sharing from the perspectives of Swiss stakeholders.

BACKGROUND: The meaningful sharing of health data between different stakeholders is central to the advancement of science and to improve care offered to individual patients. However, it is important that the interests of individual stakeholders involved in this data sharing ecosystem are taken into account to ensure fair data sharing practices. In this regard, this qualitative study investigates such practices from the perspectives of a subset of relevant Swiss expert stakeholders, using a distributive justice lens. METHODS: Using purposive and snowball sampling methodologies, 48 expert stakeholders from the Swiss healthcare and research domains were recruited for semi-structured interviews. After the experts had consented, the interviews were audio-recorded and transcribed verbatim, but omitting identifying information to ensure confidentiality and anonymity. A thematic analysis using a deductive approach was conducted to identify fair data sharing practices for secondary research purposes. Themes and subthemes were then identified and developed during the analysis. RESULTS: Three distributive justice themes were identified in the data sharing negotiation processes, and these are: (i) effort, which was subcategorized into two subthemes (i.e. a claim to data reciprocity and other reciprocal advantages, and a claim to transparency on data re-use), (ii) compensation, which was subcategorized into two subthemes (i.e. a claim to an academic compensation and a claim to a financial compensation), and lastly, (iii) contribution, i.e. the significance of data contributions should be matched with a corresponding reward. CONCLUSIONS: This qualitative study provides insights, which could inform policy-making on claims and incentives that encourage Swiss expert stakeholders to share their datasets. Importantly, several claims have been identified and justified under the basis of distributive justice principles, whilst some are more debatable and likely insufficient in justifying data sharing activities. Nonetheless, these claims should be taken seriously and discussed more broadly. Indeed, promoting health research while ensuring that healthcare systems guarantee better services, it is paramount to ensure that solutions developed are sustainable, provide fair criteria for academic careers and promote the sharing of high quality data to advance science.

Evolution or Revolution? Recommendations to Improve the Swiss Health Data Framework.

Background: Facilitating access to health data for public health and research purposes is an important element in the health policy agenda of many countries. Improvements in this sense can only be achieved with the development of an appropriate data infrastructure and the implementations of policies that also respect societal preferences. Switzerland is a revealing example of a country that has been struggling to achieve this aim. The objective of the study is to reflect on stakeholders' recommendations on how to improve the health data framework of this country. Methods: We analysed the recommendations collected as part of a qualitative study including 48 expert stakeholders from Switzerland that have been working principally with health databases. Recommendations were divided in themes and subthemes according to applied thematic analysis. Results: Stakeholders recommended several potential improvements of the health data framework in Switzerland. At the general level of mind-set and attitude, they suggested to foster the development of an explicit health data strategy, better communication and the respect of societal preferences. In terms of infrastructure, there were calls for the creation of a national data center, the improvement of IT solutions and the use of a Unique Identifier for patient data. Lastly, they recommended harmonising procedures for data access and to clarify data protection and consent rules. Conclusion: Recommendations show several potential improvements of the health data framework, but they have to be reconciled with existing policies, infrastructures and ethico-legal limitations. Achieving a gradual implementation of the recommended solutions is the preferable way forward for Switzerland and a lesson for other countries that are also seeking to improve health data access for public health and research purposes.