infraHealth 2021: Proceedings of the 8th International Conference on Infrastructures in Healthcare: Digitalization and Personal Health Data
Infrastructures in healthcare play a key role in the ongoing transformative processes of digitalization. Emerging technologies such as artificial intelligence (AI) and the Internet of Things (IoT) accelerate transformation, while the growing availability of patient-oriented health applications contributes to a more active involvement of patients in their own care and well-being. The generation of personal health data is a key outcome and at the same time, a drive and a crucial building block of healthcare digitalization. More personal health data are collected in digital form than ever before. Through mobile phones, smart watches and other connected devices patients can self-report health data, monitor their chronic conditions, support their rehabilitation process, engage with personal wellness actively, by following training and activity data. This requires appropriate infrastructure capabilities, data sharing platforms and governance arrangements for data storage, curation and access as well as for having control of personal health data.
Digitalization is not about technology alone, it occurs at the intersection of people, healthcare systems and technology. New skills for both citizens and healthcare workers are required in data gathering and use. Digitalization generates changes in work organisation and task distribution, requires novel competences and opens up for learning opportunities. Advanced technology use requires broader and future-oriented, as well as more high-level skills and competencies from both patients and health professionals to secure the continuity of healthcare services.
Digitalization also calls for critical perspectives on the evolution and utilization of digital infrastructures for personal health data. Novel approaches are needed to manage consent and data guardianship, and to educate both citizens and health personnel to understand risks. With an increased availability of personal health data, the modes of healthcare provision can be reshaped, requiring new ways of organizing health services.
We wish to bring international researchers, healthcare professionals, IT professionals, administrators, and IT enterprises together to discuss these issues at the 8th International Conference on Infrastructures in Healthcare 2021. We particularly invite contributions that are methodologically based on ethnographic/case/field studies.
infraHEALTH started out as a biennial workshop, from 2019 a biannual conference. The events were held so far in different universities in Copenhagen, Denmark (2007, 2009, and 2011), the Arctic University of Norway (Tromsø), Norway (2013), Fondazione Bruno Kessler and University of Trento, Italy (2015), again in Denmark, Aarhus University (2017), and in Vienna, TU Wien (2019).
The 8th conference took place in Kristiansand, Norway. The conference is co-organized by the University of Agder, University of Oslo and Vienna University of Technology (TU Wien).
(Infrahealth 2021 - Proceedings of the 8th International Conference on Infrastructures in Healthcare 2019, 2021) Malik, Aisha; Gyldenkærne, Christopher; Flagstad Bech, Christine; Mønsted, Troels Sune; Simonsen, Jesper
This paper investigates the digital transition that occurred during the COVID-19 pandemic. We elicit 3 cases of digital transition that took place at part of the contingency plan, that was executed in the Danish healthcare sector. It was a necessity in order to support the physical distancing between patient and healthcare staff and new treatment trajectories. We analyze the 3 digital transitions by looking at the constraining and enabling factors for implementation the transitions and discuss how the transitions where related to the installed base (EPIC/HER system) and its governance model of IT-infrastructures in the Danish healthcare system.
(Infrahealth 2021 - Proceedings of the 8th International Conference on Infrastructures in Healthcare 2019, 2021) Silsand, Line; Severinsen, Gro-Hilde; Pedersen, Rune
In this paper, a qualitative trailing research approach is used, combined with information infrastructure theory to conduct a formative evaluation on an empirical project in North Norway. In this project parts of the clinical information in the electronic health record (EHR) were structured as openEHR archetypes to enable automatic reuse of data from the EHR system to a national medical quality registry. We explore the design- challenges when structuring clinical information for different purposes. Hence, we ask the following research question: What are the premises for reusing clinical information for both primary and secondary purposes? The paper aim to contribute with empirical results and discuss the importance of understanding the prerequisites and implications of reusing clinical information for a duality of purposes. As results we outline three important issues to address. 1) the demand for attaching context when reusing variables, 2) how to ensure reusing the right data, and 3) the challenges of granulating the variables. Lessons learned indicates that governance and competence are the most important prerequisites for improving data usability by structuring clinical information.
(Infrahealth 2021 - Proceedings of the 8th International Conference on Infrastructures in Healthcare 2019, 2021) Pedersen, Asbjørn Malte; Bossen, Claus
In this paper, we investigate a newly established Business Intelligence unit providing healthcare data and analyses for management and staff at five hospitals in the Region. Created in 2015, the Business Intelligence Unit repurposes data generated by digital healthcare systems and aims to “[...] support the Region [...] in delivering more welfare, better quality, higher impact, and greater sustainability for less money.” Within healthcare – and in other domains – there is a strong push towards becoming (more) data- driven and repurpose data to increase efficiency, quality, and cost-effectiveness. However, whereas there are numerous publications on ‘datafication’ in the abstract, there is a dearth of studies on how the data at the center of such processes is actually produced, and even fewer studies on the people and organizational units engaged in this work. Hence, we are engaged in an ethnographic study on data work at the Business Intelligence Unit in order to gain insights into the work and practices of generating healthcare data for secondary use. In this paper, we present the preliminary findings focusing on three themes: end-user engagement, creating meaningful data reports, and establishing trust. One overall contribution is that whereas Business Intelligence work does require technical competences to work with large-volume data, it also requires competences of engaging with healthcare staff and understanding their work practices.
(Infrahealth 2021 - Proceedings of the 8th International Conference on Infrastructures in Healthcare 2019, 2021) Christensen, Lars Rune; Ahsan, Hasib
In this paper we draw attention to the duality of mental health assessment in a refugee camp: its sensing and numeration by Medical Assistants providing door-step services to the refugees. Drawing on ethnographic fieldwork in Kutapalong, Bangladesh, we explore the moods that pervade the refuges and their dwellings as these moods are important to the Medical Assistants that service the refugees with health care and in turn assess their mental health. While we consider attuning to moods in Heidegger’s sense as pervasive to the human existence, we consider the numeration of mental health by the medical assistants using a screening tool as equally significant. Comprehending how states of mental health are assessed in our case, we argue, requires that we pay attention to both the quantification of mental health by a screening tool as well as the ways that the experience of moods shape the assessments done by the health care professionals. Taking this analytical approach, we show how the assessment of the mental health of refugees by Medial Assistants in a camp setting were inseparably both a question of sensing as well as numeration. Where sensory experience may not be ‘enough’ on its own to warrant referral in the context of the health care infrastructure of the camp, and therefore the agency of numeration is a force that works well as an ally to the sensing of moods impressed on the medical assistants.
(Infrahealth 2021 - Proceedings of the 8th International Conference on Infrastructures in Healthcare 2019, 2021) Sloth Laursen, Cæcilie
The Covid-19 pandemic has forced hospitals to adapt and rethink how they treat patients to limit the spread of the virus and avoid overloading during spikes of admission. Danish hospitals have implemented video consultations which enable patients and clinicians to see and talk to each other without the patients coming to the hospital. Based on observations of clinicians’ video consultations with patients, as well as observations of online hospital meetings regarding virtual outpatient clinics, this paper explores clinicians’ experiences with adopting video consultations. The paper unfolds what this new form of consultation repairs, leaves behind, and engenders. Finally, the paper speculates about how the digital transformation might anchor itself in the healthcare sector, also in a post-pandemic future.
(Infrahealth 2021 - Proceedings of the 8th International Conference on Infrastructures in Healthcare 2019, 2021) Unbehaun, David; Aal, Konstantin; Richert, Viktoria; Wulf, Volker
Demographic transformation and medical-technical progress are generating new demands for standards and quality in professional caregiving. The job profile and especially the nature of care apprenticeships is changing significantly and use of digital media is becoming an increasingly ubiquitous and important aspect of the work. In this paper, we present a design case study that focuses on the development and evaluation of a multimedia learning application for and with care students. Adopting a user-centered design approach, we collected design requirements for the application in workshops and interviews with 23 care-students. The results show that it is important to create a structured approach to providing information and that social aspects such as chat allow for higher motivation and collaboration in learning. The findings also suggest that, by using game mechanisms such as a quizzes and difficulty levels, care-students can be further motivated to become more engaged with learning content.
(Infrahealth 2021 - Proceedings of the 8th International Conference on Infrastructures in Healthcare 2019, 2021) Wilson, Louise; Aanestad, Margunn; McDonald, Joe
Shared information infrastructures are required for personal health data to be shared along patient trajectories. Building such data sharing infrastructures will involve multiple stakeholders, which can be expected to share some common goals, but also to have divergent interests and priorities. Thus, collective action dilemmas easily emerge and may prevent progress. In the paper we wish to investigate how social structures influence the emergence (or avoidance) of collective action dilemmas. We have conducted a retrospective, qualitative analysis of the establishment of the Great North Care Record in the UK, focusing on the approach to mobilize and organize the participants. We find that pre-existing, multi-organisational peer networks, forums and relationships were in place and were actively used as social modules for mobilization. These networks and forums allowed spaces and occasions for interactions, observations and negotiations that were necessary to avoid and resolve collective action dilemmas. Thus, these networks and forums provided a core “social installed base” on which to build. These networks had been ‘organically’ emerging along the patient flow patterns. They followed the “Goldilocks principle” (‘just right’) – small enough to allow the avoidance or resolution of collective action dilemmas, and large enough that benefits would accrue from the cooperation.
(Infrahealth 2021 - Proceedings of the 8th International Conference on Infrastructures in Healthcare 2019, 2021) Moltubakk Kempton, Alexander; Vassilakopoulou, Polyxeni
The multiplicity of actors and the opacity of technologies involved in data management, algorithm crafting and systems ́ development for the deployment of Artificial Intelligence (AI) in healthcare create governance challenges. This study analyzes extant AI governance research in the context of healthcare focusing on accountability, transparency and explainability. We find that a significant part of this body of research lacks conceptual clarity and that the relationship between accountability, transparency and explainability is not fully explored. We also find that papers written back in the 1980s, identify and discuss many of the issues that are currently discussed. Up to today, most published research is only conceptual and brings contributions in the form of frameworks and guidelines that need to be further investigated empirically.
(Infrahealth 2021 - Proceedings of the 8th International Conference on Infrastructures in Healthcare 2019, 2021) Mehmood, Hamid; Farshchian, Babak A.
In recent years, both the public and private sector organizations have started shifting to large-scale information systems (IS). Still, the results of these large-scale implementations are not very promising. Ensuring user participation is considered as a (partial) solution to overcome the issues associated with large-scale IS development. Given the complexities associated with the scale, the activities happening in large-scale projects are categorized as front-stage and back-stage, and it is essential to engage users in both of these activities. The literature around the component of user participation in back-stage of large-scale projects is not very mature. We contribute to this by studying a large-scale medical record system implementation in central Norway. Our findings highlight that the back-stage activities are very prevalent in large-scale projects whereas these activities lack adequate user participation.
(Infrahealth 2021 - Proceedings of the 8th International Conference on Infrastructures in Healthcare 2019, 2021) Tellioğlu, Hilda
Informal health caring became a substantial part of our society. In Europe, official health care institutions cannot really cover the required care activities without the involvement of family members in caring activities. This role was taken by informal caregivers for a long time already. This paper tries to bring up this crucial setting into attention of health care community by identifying caregivers’ needs and requirements, mapping infrastructural elements to caregivers’ needs to achieve a satisfactory product, technology and service provision in this area, by suggesting an interconnected health care infrastructure as a possible solution. This analysis ends up in a more complex interconnected care infrastructure consisting of people and technology components, in the tradition of research on socio technology.