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Med indførslen af sundhed.dk har borgere i Danmark fået digital adgang til deres egne helbredsoplysninger såsom test- og screeningsvar, journalnotater osv. Den stigende trans- parens i sundhedsvæsenet påstås at fremme medinddragelse og mulighed for at engagere sig i eget helbred. I denne artikel fokuserer vi derfor på, hvad der sker i praksis, når forskellige mennesker tilgår deres helbredsoplysninger på sundhed.dk. Sammensat af to etnografiske studier og et interviewstudie viser vi, hvordan testsvar for deltagerne er svære at forstå, og hvordan abnorme testsvar, selv uden klinisk betydning, skaber bekymring og angst – også længe efter at svaret er givet og en eventuel behandling ovre. Med udgangspunkt i en teoretisk diskussion af hvordan det postmoderne informationssamfund beror på troen på oplysning, argumenterer vi for, at målet om at skabe mere tryghed gennem adgang til egen helbredsjournal, faktisk for nogle i stedet kan skabe utryghed, og ligefrem skade den enkelte, det vi kalder informationens ironi. Ved at bruge dette begreb diskuterer vi, hvordan di- gitale helbredsjournaler som sundhed.dk ikke i sig selv fremmer demokratiske rettigheder som inddragelse og adgang til egne data, men ligefrem kan skade. Vi argumenterer derfor for, at digitale helbredsinitiativer også underlægges en etisk afvejning af gavn og skade.

Denne artikel beskriver de udfordringer, vi er stødt på i det indledende arbejde, i bestræ- belsen på at udvikle et nyt patient rapporteret outcome measure (PROM) for livskvalitet blandt patienter med multisygdom. De eksisterende livskvalitetsmål, der i dag anvendes, præsenteres sammen med en redegørelse for deres relation til dette projekt. Derefter in- troduceres projektets teoretiske ramme for en patientcentreret, behovsrelateret livskvalitet, The Needs-Based Model. Endelig diskuteres udfordringerne ved at definere begrebet livs- kvalitet, så det er kvantificerbart og kan bruges på populationsniveau i forskningsmæssige sammenhænge.






Tre af de indledende interviews i et pilotstudie er i denne sammenhæng udvalgt som ca- ses, fordi de på hver deres måde bidrager til at illustrere de tematiske udfordringer: adaptiv livskvalitet og temporalitet i multisygdom. Data fra disse interviews viser, at selvevaluerin- ger af livskvalitet kan ændres gennem forløbet af en sygdom, og at der i disse ændringer kan være tale om en iboende gradvis tilpasning til sygdommene. Interviewene tydeliggør herudover koblingen af temporalitet med multisygdom som en både progressiv og cyklisk faktor og den deraf afledte mulige fluktuation i livskvalitet.
Til sidst præsenteres de refleksioner og de valg, forfatterne har foretaget, for at tage højde for forskellige definitioner af multisygdom samt adaption og temporaliteten i multisygdom. Herunder begrænsningerne ved at anvende et øjebliksbillede af livskvalitet som et forsk- ningsmæssigt værktøj.

Aims: In three days at the beginning of the COVID-19 pandemic, the Copenhagen Emergency Medical Services developed a digital diagnostic device. The purpose was to assess and triage potential COVID-19 symptoms and to reduce the number of calls to public health-care helplines. The device was used almost 150,000 times in a few weeks and was described by politicians and administrators as a solution and success. However, high usage cannot serve as the sole criterion of success. What might be adequate criteria? And should digital triage for citizens by default be considered low risk? Methods: This paper reflects on the uncertain aspects of the performance, risks and issues of accountability pertaining to the digital diagnostic device in order to draw lessons for future improvements. The analysis is based on the principles of evidence-based medicine (EBM), the EU and US regulations of medical devices and the taxonomy of uncertainty in health care by Han et al. Results: Lessons for future digital devices are (a) the need for clear criteria of success, (b) the importance of awareness of other severe diseases when triaging, (c) the priority of designing the device to collect data for evaluation and (d) clear allocation of responsibilities. Conclusions: A device meant to substitute triage for citizens according to its own criteria of success should not by default be considered as low risk. In a pandemic age dependent on digitalisation, it is therefore important not to abandon the ethos of EBM, but instead to prepare the ground for new ways of building evidence of effect.

AIMS: In three days at the beginning of the COVID-19 pandemic, the Copenhagen Emergency Medical Services developed a digital diagnostic device. The purpose was to assess and triage potential COVID-19 symptoms and to reduce the number of calls to public health-care helplines. The device was used almost 150,000 times in a few weeks and was described by politicians and administrators as a solution and success. However, high usage cannot serve as the sole criterion of success. What might be adequate criteria? And should digital triage for citizens by default be considered low risk? METHODS: This paper reflects on the uncertain aspects of the performance, risks and issues of accountability pertaining to the digital diagnostic device in order to draw lessons for future improvements. The analysis is based on the principles of evidence-based medicine (EBM), the EU and US regulations of medical devices and the taxonomy of uncertainty in health care by Han et al. RESULTS: Lessons for future digital devices are (a) the need for clear criteria of success, (b) the importance of awareness of other severe diseases when triaging, (c) the priority of designing the device to collect data for evaluation and (d) clear allocation of responsibilities. CONCLUSIONS: A device meant to substitute triage for citizens according to its own criteria of success should not by default be considered as low risk. In a pandemic age dependent on digitalisation, it is therefore important not to abandon the ethos of EBM, but instead to prepare the ground for new ways of building evidence of effect.

AbstractIn contemporary policy discourses, data are presented as key assets for improving health‐care quality: policymakers want health care to become 'data driven'. In this article, we focus on a particular example of this ambition, namely a new Danish national quality development program for general practitioners (GPs) where doctors are placed in so‐called 'clusters'. In these clusters, GPs are obliged to assess their own and colleagues' clinical quality with data derived from their own clinics—using comparisons, averages and benchmarks. Based on semi‐structured interviews with Danish GPs and drawing on Science and Technology Studies, we explore how GPs understand these data, and what makes them trust—or question—a data analysis. The GPs describe how they change clinical practices based on these discussions of data. So, when and how do data for quality assurance come to influence their perceptions of quality? By exploring these issues, we carve out a role for a sociological engagement with evidence in everyday medical practices. In conclusion, we suggest a need to move from the aim of being data driven to one of being data informed.

Antallet af mennesker, der lever med multisygdom, er gennem de seneste år steget markant, både som et resultat af en aldrende befolkning, men også på grund af en forbedret medicinsk behandling af, og tertiær forebyggelse hos, mennesker med kroniske sygdomme. Interessen i forskning om multisygdom har også været støt stigende de seneste år, men, trods denne interesse, er der fortsat ingen konsensus om, hvordan multisygdom skal defineres, og varia- tionen i, hvordan multisygdom bliver defineret og brugt i den videnskabelige litteratur, er stor. Med denne artikel vil vi diskutere konsekvenserne af heterogeniteten i definitionen af multisygdom. Vi tager udgangspunkt i en systematisk gennemgang af definitionen af mul- tisygdom, og diskuterer, om begrebet multisygdom giver mening og for hvem, og om vi med de eksisterende definitioner kan risikere at fokusere på andre patienter end dem, der har det største behov. Dette leder derefter over i en diskussion om, hvorvidt definitionsproblematikkerne skaber risiko for, at multisygdom i sig selv som begreb kan føre til overdiagnostik og dermed være til mere skade end gavn for patienterne.

This paper documents how an ethically aligned co-design methodology ensures trustworthiness in the early design phase of an artificial intelligence (AI) system component for healthcare. The system explains decisions made by deep learning networks analyzing images of skin lesions. The co-design of trustworthy AI developed here used a holistic approach rather than a static ethical checklist and required a multidisciplinary team of experts working with the AI designers and their managers. Ethical, legal, and technical issues potentially arising from the future use of the AI system were investigated. This paper is a first report on co-designing in the early design phase. Our results can also serve as guidance for other early-phase AI-similar tool developments.