Ethical challenges in the prioritization of elective care in pandemic settings: On the significance of time-sensitive scoring.

In times of ongoing resource shortages, appropriate evaluation criteria are crucial for the ethical prioritization of medical care. While the use of scoring models as tools for prioritization is widespread, they are barely discussed in the medical-ethical discourse in the context of the COVID-19 pandemic. During this time, the challenge of providing care for patients in need has promoted consequentialist reasoning. In this light, we advocate for the integration of time- and context-sensitive scoring (TCsS) models in prioritization policies that foster treatment opportunities for patients with subacute and chronic conditions. We argue, first, that TCsSs enable a more efficient use of resources, reducing avoidable harm to patients by preventing arbitrary postponement of necessary but nonurgent interventions. Second, we contend that on an interrelational level, TCsSs render decision-making pathways more transparent, which promotes the information requirement of patient autonomy and raises confidence in the resulting prioritization decision. Third, we claim that TCsS contributes to distributive justice by reallocating available resources to the benefit of elective patients. We conclude that TCsSs promote anticipatory measures that extend the timeframe for responsible action into the future. This strengthens patients' ability to exercise their right to healthcare-primarily during times of crisis, but ultimately in the longer term too.

Not in their hands only: hospital hygiene, evidence and collective moral responsibility.

Hospital acquired infections (HAIs) are a major threat to patient safety. This paper addresses the following question: given what is known about the causes of and possible interventions on HAIs, to whom or what should the moral responsibility for preventing these infections be attributed? First, we show how generating robust evidence on the effectiveness of preventive hygiene measures is a complex endeavour and review the existing evidence on the causes of HAIs. Second, we demonstrate that the existing literature on the ethical aspects of infection control has focused on responsibility at the individual-level. Thirdly, we argue that these accounts do not accommodate systemic factors relevant for HAI prevention. We show that the notion of collective responsibility is useful for making understandable how systemic factors, such as employment conditions in hospitals, are both causally and ethically relevant in infection control.

The contested meaning of "long COVID" - Patients, doctors, and the politics of subjective evidence.

In our article, we reconstruct how the patient-made term "long COVID" was able to become a widely accepted concept in public discourses. While the condition was initially invisible to the public eye, we show how the mobilization of subjective evidence online, i.e., the dissemination of reports on the different experiences of lasting symptoms, was able to transform the condition into a crucial feature of the coronavirus pandemic. We explore how stakeholders used the term "long COVID" in online media and in other channels to create their illness and group identity, but also to demarcate the personal experience and experiential knowledge of long COVID from that of other sources. Our exploratory study addresses two questions. Firstly, how the mobilization of subjective evidence leads to the recognition of long COVID and the development of treatment interventions in medicine; and secondly, what distinguishes these developments from other examples of subjective evidence mobilization. We argue that the long COVID movement was able to fill crucial knowledge gaps in the pandemic discourses, making long COVID a legitimate concern of official measures to counter the pandemic. By first showing how illness experiences were gathered that defied official classifications of COVID-19, we show how patients made the "long COVID" term. Then we compare the clinical and social identity of long COVID to that of chronic fatigue syndrome (ME/CFS), before we examine the social and epistemic processes at work in the digital and medial discourses that have transformed how the pandemic is perceived through the lens of long COVID. Building on this, we finally demonstrate how the alignment of medical professionals as patients with the movement has challenged the normative role of clinical evidence, leading to new forms of medical action to tackle the pandemic.

Seeing the value of experiential knowledge through COVID-19.

Seeing the entwinement of social and epistemic challenges through COVID, we discuss the perils of simplistic appeals to 'follow the science'. A hardened scientism risks excarbating social conflict and fueling conspiracy beliefs. Instead, we see an opportunity to devise more inclusive medical knowledge practices through endorsing experiential knowledge alongside traditional evidence types.

Cancer and Life Beyond It: Patient Testimony as a Contribution to Subjective Evidence.

Patient narratives are a very valuable literary and medical resource. They transcribe the experience of illness into the life stories of the subject and the author. A serious case of cancer triggers the very individual experience of vulnerability, suffering, dependence, and even contingency in the no longer 'open' future. Even after overcoming cancer, life is never the same again. Writing about one's own experience of cancer is a hermeneutic feat of strength with ethical and aesthetic implications. In the age of personalized and evidence-based medicine, patient narratives offer a particular and necessary supplement to the objectifying medical perspective, since they constitute expressions of subjective evidence. This article is based on the direct experience of cancer by the co-author of the narrative. The long history of her illness is presented chronologically in her own words and has been translated from Italian to English. This is followed by an essay, published here for the first time, on "the life beyond cancer", on the patient's time without tumors and the consequences of therapies and mutilating operations. Our methodological approach is based on Havi Carel's Phenomenology of Illness. The close reading of this pathography focuses on three aspects: (1) the effect and power of words; (2) the passage from wariness to awareness; and (3) the maintenance of personal quality of life during and after cancer.

[The "Historic Study" SOLIDARITY-Research's Answer to the Sars-CoV-2 Pandemic]. / Die "historische Studie" SOLIDARITY als Antwort der Forschung auf die Sars-CoV-2 Pandemie.

This paper is part of Forum COVID-19: Perspectives in the Humanities and Social Sciences. The novel coronavirus (Sars-CoV-2) poses a huge challenge to the world community. Knowledge about the virus and its properties is limited, but there is a great need to base political and medical decisions on scientific knowledge. This situation is leading to a dynamization of research. A prominent example of such a development is SOLIDARITY. The epistemological dimensions of this trial, which is coordinated by the WHO, and the resulting ethical implications are discussed in this article.

[Advance Care Planning (ACP). A Systematic Review of ACP Behavior by Women and Men in Germany]. / Behandlung im Voraus Planen (BVP): Eine Übersichtsarbeit über das Vorsorgeverhalten von Frauen und Männern in Deutschland.

BACKGROUND: The desire to retain control over one's life until the end has become highly important in our society. Women and men of different ages and of diverse social, cultural, and educational backgrounds increasingly decide in advance about prospective medical treatment (Advance Care Planning, ACP). OBJECTIVES: Identification and analysis of literature on advance care planning behavior of men and women in Germany. The focus is on gender-specific differences. MATERIALS AND METHODS: Systematic review of empirical studies with gender-specific data on advance care planning behavior in Germany. In-depth analysis of 21 of the 479 retrieved articles. RESULTS: The analysis reveals that Advance Care Planning behavior is influenced by interacting factors such as gender, age, cultural and ethnic background, religion, and education. Gender alone does not explain the prevalence of ACP behavior. This prima facie negative result is partly due to the study designs. Heterogeneous data and a lack of gender sensitivity leave the question concerning the relationships between ACP behavior and gender mostly unanswered. CONCLUSIONS: The analyzed studies reduce gender to a dualistic classification system, dismiss individual role models and positions and also neglect geographic and cultural contexts. There is a need for studies sensitive to gender and culture.

Is a shift from research on individual medical error to research on health information technology underway? A 40-year analysis of publication trends in medical journals.

OBJECTIVE: In 1983, McIntyre and Popper underscored the need for more openness in dealing with errors in medicine. Since then, much has been written on individual medical errors. Furthermore, at the beginning of the 21st century, researchers and medical practitioners increasingly approached individual medical errors through health information technology. Hence, the question arises whether the attention of biomedical researchers shifted from individual medical errors to health information technology. We ran a study to determine publication trends concerning individual medical errors and health information technology in medical journals over the last 40 years. METHODS: We used the Medical Subject Headings (MeSH) taxonomy in the database MEDLINE. Each year, we analyzed the percentage of relevant publications to the total number of publications in MEDLINE. The trends identified were tested for statistical significance. RESULTS: Our analysis showed that the percentage of publications dealing with individual medical errors increased from 1976 until the beginning of the 21st century but began to drop in 2003. Both the upward and the downward trends were statistically significant (P < 0.001). A breakdown by country revealed that it was the weight of the US and British publications that determined the overall downward trend after 2003. On the other hand, the percentage of publications dealing with health information technology doubled between 2003 and 2015. The upward trend was statistically significant (P < 0.001). CONCLUSIONS: The identified trends suggest that the attention of biomedical researchers partially shifted from individual medical errors to health information technology in the USA and the UK.

On the Function, Utility, and Fragility of the Nose: Early Modern Patients and Their Surgeons.

This paper presents how rhinoplasty as a surgical technique with a particular social impact developed, and how motivated patients and courageous surgeons contributed to the process before Gaspare Tagliacozzi published his seminal work De curtorum chirurgia in 1597. The few sources that provide evidence of people having their noses reconstructed enable us to understand how this technique gradually spread across Europe from the south of Italy northwards. They also give information about the fate of some individual patients and their surgeons. While patients considered rhinoplasty a painful but worthwhile procedure, liberating them from having to wear a prosthesis, scholars' and physicians' opinions on the subject were polarized.

Cohort profile: Greifswald approach to individualized medicine (GANI_MED).

BACKGROUND: Individualized Medicine aims at providing optimal treatment for an individual patient at a given time based on his specific genetic and molecular characteristics. This requires excellent clinical stratification of patients as well as the availability of genomic data and biomarkers as prerequisites for the development of novel diagnostic tools and therapeutic strategies. The University Medicine Greifswald, Germany, has launched the "Greifswald Approach to Individualized Medicine" (GANI_MED) project to address major challenges of Individualized Medicine. Herein, we describe the implementation of the scientific and clinical infrastructure that allows future translation of findings relevant to Individualized Medicine into clinical practice. METHODS/DESIGN: Clinical patient cohorts (N > 5,000) with an emphasis on metabolic and cardiovascular diseases are being established following a standardized protocol for the assessment of medical history, laboratory biomarkers, and the collection of various biosamples for bio-banking purposes. A multi-omics based biomarker assessment including genome-wide genotyping, transcriptome, metabolome, and proteome analyses complements the multi-level approach of GANI_MED. Comparisons with the general background population as characterized by our Study of Health in Pomerania (SHIP) are performed. A central data management structure has been implemented to capture and integrate all relevant clinical data for research purposes. Ethical research projects on informed consent procedures, reporting of incidental findings, and economic evaluations were launched in parallel.