Fair and equitable AI in biomedical research and healthcare: Social science perspectives.

Artificial intelligence (AI) offers opportunities but also challenges for biomedical research and healthcare. This position paper shares the results of the international conference "Fair medicine and AI" (online 3-5 March 2021). Scholars from science and technology studies (STS), gender studies, and ethics of science and technology formulated opportunities, challenges, and research and development desiderata for AI in healthcare. AI systems and solutions, which are being rapidly developed and applied, may have undesirable and unintended consequences including the risk of perpetuating health inequalities for marginalized groups. Socially robust development and implications of AI in healthcare require urgent investigation. There is a particular dearth of studies in human-AI interaction and how this may best be configured to dependably deliver safe, effective and equitable healthcare. To address these challenges, we need to establish diverse and interdisciplinary teams equipped to develop and apply medical AI in a fair, accountable and transparent manner. We formulate the importance of including social science perspectives in the development of intersectionally beneficent and equitable AI for biomedical research and healthcare, in part by strengthening AI health evaluation.

"It's the First Barrier" - Lack of Common Language a Major Obstacle When Accessing/Providing Healthcare Services Across Europe.

International migration is shaping and changing urban areas as well as impacting on healthcare access and provision in Europe. To investigate how residents of superdiverse neighborhoods put together their healthcare, we conducted qualitative interviews with 76 healthcare providers and 160 residents in four European cities - Bremen, Germany; Birmingham, UK; Lisbon, Portugal and Uppsala, Sweden, between September 2015 and April 2017. A common theme arising from the data was language and communication obstacles, with both healthcare providers and users experiencing language difficulties, despite all four countries having interpretation policies or guidelines to address language barriers in healthcare. Official interpreter services were seen to be unreliable and sometimes of poor quality, leading to a reliance on informal interpretation. Some coping strategies used by both service providers and users led to successful communication despite the lack of a common language. Where communication failed, this led to feelings of dissatisfaction and frustration among both users and providers. Language difficulties came up across all participating countries even though this was not prompted by interview questions, which highlights the widespread nature of language barriers and communication barriers and the need to address them in order to promote equal accessibility to good quality healthcare.

[Digital health literacy in Germany - requested, but not supported? Results of the empirical study TK-DiSK]. / Digitale Gesundheitskompetenz in Deutschland - gefordert, aber nicht gefördert? Ergebnisse der empirischen Studie TK-DiSK.

In Germany, the digital transformation is considered the key to "growth and prosperity". Beyond the debate on the required technical conditions, digital health literacy is seen as a prerequisite for a democratic and patient oriented digitization of the health system. The study "TK-DiSK: digital - self-determined - competent" aimed at examining the perspectives and status of stakeholders in the German health system and of further developing the concept of digital health literacy. Document analysis, surveys and interviews revealed a paradox about digital health literacy: though it is generally seen as a "highly relevant' issue, there is hardly any substantial discussion of it. Interviewed experts did not share a common understanding of its content, disagreed on ways of promoting it, and disputed the agencies to be held responsible for ensuring digital health literacy. Focus groups with patients clearly showed that the facilitation of patient autonomy is a central aspect for their assessment of digital health technologies. This article develops a timely definition of digital health literacy and argues for a comprehensive and targeted promotion addressing individuals as well as organizations.

Health literacy as a social practice: Social and empirical dimensions of knowledge on health and healthcare.

Health literacy has become a hot topic in health research and public health promotion. Most definitions specify health literacy as an individual cognitive skill, and surveys such as the EU-HLS which ask people to self-rate their decision-making capacity in the health system, grade a majority of the population as having an inadequate health literacy. Inspired by a praxeological understanding of knowledge and based on an empirical study on welfare bricolage in superdiverse urban neighborhoods, this paper explores health literacy ethnographically and highlights people's knowledge, creative practices and experiences concerning health and healthcare. It draws on 42 semi-structured interviews conducted with a highly diverse sample of residents in Bremen, Germany, between September 2015 and April 2017. The interviews were analyzed with the help of collaborative systematic thematic analysis. The findings question the individualistic and rationalistic bias of conventional approaches to health literacy and suggest that health literacy as a social practice is situational, multidimensional - comprised of different sources and forms of knowledge - and co-produced in social relations. This reformulation of the concept suggests that future research on health literacy should adopt a resource-oriented approach and embrace the rich variety of health knowledge practices.

Access to healthcare in superdiverse neighbourhoods.

To date little attention has been focused on how the differing features of 'superdiverse' neighbourhoods shape residents' access to healthcare services. Through utilising a cross-national mixed-methods approach, the paper highlights how defining features of superdiverse neighbourhoods - 'newness', 'novelty' and 'diversity' - influence a number of neighbourhood 'domains' and 'rules of access' that regulate access to healthcare. Issues of uncertainty, affordability, compliance, transnationalism and the diversity of community and local sociability are identified as being particularly significant, but which may vary in importance according to the nationality, ethnicity and / or religion of particular individuals.

Individuals on alert: digital epidemiology and the individualization of surveillance.

This article examines how digital epidemiology and eHealth coalesce into a powerful health surveillance system that fundamentally changes present notions of body and health. In the age of Big Data and Quantified Self, the conceptual and practical distinctions between individual and population body, personal and public health, surveillance and health care are diminishing. Expanding on Armstrong's concept of "surveillance medicine" to "quantified self medicine" and drawing on my own research on the symbolic power of statistical constructs in medical encounters, this article explores the impact of digital health surveillance on people's perceptions, actions and subjectivities. It discusses the epistemic confusions and paradoxes produced by a health care system that increasingly treats patients as risk profiles and prompts them to do the same, namely to perceive and manage themselves as a bundle of health and security risks. Since these risks are necessarily constructed in reference to epidemiological data that postulate a statistical gaze, they also construct or make-up disembodied "individuals on alert".