Infrastructures should make healthcare smart in terms of improving quality and efficiency, enabling novel solutions to hitherto obstinate problems and challenges, as well as facilitating cooperation and coordination across sectors, organisational units, and divides between patients, healthcare professionals, and administration.
In the recent years, we have seen many examples of being smart. General practitioners can prescribe medicine to be immediately available at pharmacies and receive test results digitally. Patients can look into their own health records through a few clicks, and generate healthcare data themselves which can be scrutinized by healthcare staff. Electronic health records facilitate cooperation between physicians, nurses, labs, etc. with sofar unprecedented speed, and across multiple locations.
At the same time, we also see healthcare infrastructures where digitization does not lead to smartness. In the name of Big Data, healthcare professionals are required to do more and more precise documentation leading either to lower productivity or burnout. Envisioned effectivity through IT leads to lay off of support staff for clinicians, such as when secretaries helping physicians and nurses are fired, since IT is supposed to make the latter work smarter and with less support. Further, smart large repositories of data can lead to data-driven healthcare, but also entails risk of large-scale breaches of privacy.
We wish to bring international researchers, healthcare professionals, IT professionals, administrators, and IT enterprises together to discuss these issues at the 7th International Conference on Infrastructures in Healthcare 2019 (See Call for Participation). We particularly invite contributions that are methodologically based on ethnographic/case/field studies.
“Infrastructures for Healthcare” 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), and again in Denmark, Aarhus University (2017).
The seventh edition will be a conference and take place in Vienna, Austria. The conference will be co-organized with Vienna University of Technology (TU Wien) and Aarhus University.
(Infrahealth 2019 - Proceedings of the 7th International Conference on Infrastructures in Healthcare 2019, 2019) Vassilakopoulou, Polyxeni; Øvrelid, Egil; Aanestad, Margunn
Fostering innovation while maintaining a traditional IT infrastructure is challenging. We have conducted a qualitative study in the health sector, following three ICT-related innovation initiatives in a hospital. The innovators sought to connect the new solutions with the complex hospital digital infrastructure but the governance regime was not conducive to experimental development. We describe the challenges of relating to the existing information infrastructure and thereby identify the requirements for innovative projects to be sustained. In our analysis we zoom-in on the problematic “meeting points” between the innovation initiatives and the pre-existing infrastructure, as these reveal which capabilities and resources are required for the existing infrastructure to accomodate novelty. Conceptually, we frame these as boundary resources. Our study contributes a concrete description of the resources that are required if large, entrenched infrastructures shall be able to harness innovation.
(Infrahealth 2019 - Proceedings of the 7th International Conference on Infrastructures in Healthcare 2019, 2019) Langstrup, Henriette
Patient Reported Outcome data (PRO data) are standardized questionnaire data on patients’ own experience of their health and quality of life increasingly collected on digital platforms as part of treatment trajectories. In Denmark, national efforts are being put into developing questionnaires tools for meaningful clinical use of such data in cross-sectorial clinical pathways. PRO data is among other things seen as a way to enhance patient involvement by focusing the clinical encounter on “what matters to patients”. With increased datafication of healthcare, some see the power of the irreducible patient narrative set aside for quantified, standardized and thus reductive representations of the patient – PRO data potentially being a case in point. Rather than assuming such reductionism, in this paper I will explore empirically how health professionals engaged in developing PRO-tools enact the relationship between PRO data and more complex, narrative representations of the patient. Based on fieldwork in the national Danish initiative engaged in choosing and developing PRO-tools for heart- rehabilitation, I will suggest that PRO data is both enacted as an illumination of the patient narrative, a substitution for the narrative and an inhibitor of the narrative. The tensions between different enactments call for further reflections on the role of PRO in emergent digital health infrastructures.
(Infrahealth 2019 - Proceedings of the 7th International Conference on Infrastructures in Healthcare 2019, 2019) Silsand, Line; Severinsen, Gro-Hilde; Ellingsen, Gunnar; Christensen, Bente
The paper reports from one of the first efforts to generate data for a national register by automatically reusing data recorded in the clinical documentation process. Today, the process of reporting to national registries implies filling out a paper-based or electronic form as the final step of documenting patients’ treatment. The registries’ forms are hence not part of the patients’ Electronic Patient Record (EPR). Therefore, the Norwegian Directorate for e-health has established a program for developing a shared infrastructure for 51 national registers, aiming to improve the utilization and quality of the reported health data. We argue that the quality of the registries’ data rests heavily on an understanding of today’s practice and how and when to capture the data. This paper describes the initial work of facilitating automatic reuse of standardized clinical data recorded from the EPR to the Norwegian registry for spine surgery. The empirical setting is the regional FRESK (Future systems in the clinic) program (2017-2022), in the North Norwegian Health Region.
(Infrahealth 2019 - Proceedings of the 7th International Conference on Infrastructures in Healthcare 2019, 2019) Ellingsen, Gunnar; Hertzum, Morten
Currently, much software in healthcare is introduced as large-scale suite systems that aim at covering needed functionality for different institutions, wards, and professionals. With these systems, the software is already in place and development is largely replaced with the activity of configuration. Configurable suite systems create new conditions for user participation in healthcare software projects. We want to explore these conditions further, and we ask the following research question: What is the users’ role in the implementation of large healthcare suite systems? In this study, we discuss four ways in which user participation in implementing large-scale suite systems are different from smaller-scale software projects.
(Infrahealth 2019 - Proceedings of the 7th International Conference on Infrastructures in Healthcare 2019, 2019) Fornasini, Silvia
Healthcare institutions increasingly delegate the self-management of their condition to patients and their extended network: consequently, there is an increasing production of patient health data outside healthcare settings, also thanks to the increasing number of digital technologies able to assist in the collecting, interpretation and use of health data. This shift on the “personal” dimension of data has placed emphasis on self- knowledge practices supported by personal informatics systems. In the last years, studies on digital technologies supporting lifestyle-related diseases are becoming interested in the so-called “personal experiments”, emphasizing self-interpretation of patient- generated health data through self-reflection. In this paper I will present some preliminary points concerning my PhD research project, in which I’m following the co-design and implementation of technology-supported personal experiments aiming to encourage type 2 diabetes patients to collect personal health data and increase their motivation and self- knowledge.
(Infrahealth 2019 - Proceedings of the 7th International Conference on Infrastructures in Healthcare 2019, 2019) Agudelo-Londoño, Sandra; Vassilakopoulou, Polyxeni; Aanestad, Margunn
This paper explores how the Colombian MIPRES system emerged as a nationwide ePrescription solution and, how it evolved into a backbone for the country’s Information Infrastructure. Our empirical qualitative study is based on the analysis of interviews conducted in the Ministry of Health, hospitals, insurance companies and patients’ organizations. In addition, documents and notes from ethnographic observations were analyzed. Information Infrastructure theoretical insights were employed to analyze the contextual conditions that shaped this evolution. Initially, MIPRES was conceived as a simple reporting system. Through its non-threatening strategy and alliances, it gained momentum like a snowball and, grew to become a central component of the Colombian health information infrastructure. Considered a “successful” implementation, MIPRES triggered a new network of relationships that exists in the background, it is invisible, and frequently taken for granted; thus we conclude that MIPRES wove around it the health information infrastructure of Colombia.
(Infrahealth 2019 - Proceedings of the 7th International Conference on Infrastructures in Healthcare 2019, 2019) Bansler, Jørgen P.
This paper reports work-in-progress, investigating user-driven adaptation of a large complex EHR system in two Danish regions. It focuses on the experiences of so- called ‘physician builders,’ tasked with adapting the system, and identifies five issues and challenges that are of particular concern to the builders. Finally, it discusses how working as a builder can be seen as ‘voluntary work’.
(Infrahealth 2019 - Proceedings of the 7th International Conference on Infrastructures in Healthcare 2019, 2019) Piras, Enrico Maria; Ferro, Antonella
‘Healthcare infrastructures’ is often associated with large, complex and costly technical solutions made available by institutions. The widespread use of smart devices made possible the development of information exchange building on general purpose communication technologies. Through the analysis of an expert opinion service for breast cancer via WhatsApp, we illustrate the process of setting up the service, the challenges and the ramifications of health information exchange taking place through non-institutional channels. We introduce the concept of ‘grassroot infrastructures’ to indicate socio-technical systems created and managed by lower-ranked organizational actors, invisible to rationalized representations of work.
(Infrahealth 2019 - Proceedings of the 7th International Conference on Infrastructures in Healthcare 2019, 2019) Zanutto, Alberto; Piras, Enrico Maria
As Workplace Health Promotion (WHP) initiatives are gaining relevance in welfare programmes, employers are becoming more interested in ensuring that workers, particularly those at risk, can benefit from guidance in following lifestyle intervention that can reduce extra costs for the companies who employ them. This opens new possibilities for dedicated health infrastructures in the workplace enabling health information sharing and connecting various stakeholders, such as doctors, employees, employers, data protection officers, designers. In this paper we describe DMCoach+, a platform aimed at supporting healthy lifestyles at work- Overall a group of 120 users are followed by a physician as coach for six months assisting them getting aware of their basic parameters (heart rate, BMI, waistline, activity time) and, through a gamified experience, improve their condition. The aim of this paper is to provide a preliminary discussion to understand how stakeholders and users across three pilots (two in Italy and one in the Netherlands) have planned the use of the app DMCoach+, which was provided by their work organisations as part of a more widespread health welfare infrastructure. The paper features a preliminary discussion about the main findings about the stakeholder’s workaround to shape the infrastructure designed for people and organisations that have voluntarily participated in a pilot to prevent illness in the workplace.
(Infrahealth 2019 - Proceedings of the 7th International Conference on Infrastructures in Healthcare 2019, 2019) Grisota, Miria; Kempton, Alexander
Data-driven remote care involves more than just monitoring patients’ health values through digital means. It requires a two ways interaction between health professionals and patients where reciprocal trust and personalized care develop over time. For this to happen, continuity in interaction is crucial. In this study, we focus on the work of nurses to achieve continuity in data-driven remote care. Specifically, we focus on how nurses work on digital representations. This paper examines this issue through a case study of nurses work in a remote care center in primary care for patients with chronic conditions. We found that nurses work by enriching, tailoring and improving digital representations, and through these practices they support continuous interactions. Our findings show that the work on digital representations is highly iterative and show how the nurses work to keep the iterations going.