“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).
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- Text DocumentOpen AccessA Methodology to Assess Changes in Healthcare Infrastructure in Stockholm(Infrahealth 2017 - Proceedings of the 6th International Workshop on Infrastructure in Healthcare 2017, 2017) Shreenath, Vinutha Magal; Moustaid, Elhabib; Meijer, SebastiaanDesigning major shifts in complex systems such as healthcare requires a combination of approaches and perspectives. A considerable change in healthcare infrastructure is due to occur in Stockholm with a major emergency department being closed. As this change impacts operations as well as governance, multiple methods are needed to assess it. In this paper, we present an approach combining simulations and data mining of healthcare data to assess the changes to healthcare system in Stockholm; and discuss the opportunities and challenges of doing so.
- Conference PaperOpen AccessAccess and Use of Digital Rheumatology: Exploring “the social aspect”(Infrahealth 2021 - Proceedings of the 8th International Conference on Infrastructures in Healthcare 2019, 2021) Muehlensiepen, Felix; Hochwarter, StefanThis paper reports on the results of a secondary analysis of qualitative and quantitative research data focused on the socio-demographic and -economic dimension of digital health service and telemedicine use in German rheumatology care. The qualitative data analysis revealed that particularly age, place of residence and economic wealth are attributed a high relevance for the use of digital health through patients. Among physicians, age in particular was highlighted to influence digital services. Access to technical equipment is unequally distributed in society, leading to a wealth gap, which, according to participants, should find greater consideration. The quantitative data suggested correlation between the location of medical practice and telemedicine use, which might indicate poorer infrastructure in rural areas in Germany. These results are transferred to Bourdieu's theory of social space (1979) and types of capital (1986). The individual positioning in social space is associated with health-enhancing privilege and opportunities to parts of society. This may also include digital health use, which according to our data depends in particular on the individual economic capital of each person. The influence of social, cultural and symbolic capital on digital health has yet to be explored, based on further primary data research.
- Conference PaperOpen AccessAccountability, Transparency and Explainability in AI for Healthcare(Infrahealth 2021 - Proceedings of the 8th International Conference on Infrastructures in Healthcare 2019, 2021) Moltubakk Kempton, Alexander; Vassilakopoulou, PolyxeniThe 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.
- Conference PaperOpen AccessAdaptation of Clinical Information Infrastructures by and for Users(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’.
- Conference PaperOpen AccessAddressing collective action dilemmas in the sharing of personal health data: Goldilocks and the installed base(Infrahealth 2021 - Proceedings of the 8th International Conference on Infrastructures in Healthcare 2019, 2021) Wilson, Louise; Aanestad, Margunn; McDonald, JoeShared 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.
- Conference PaperOpen AccessBack-Stage User Participation in Large-Scale IS Projects(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.
- Text DocumentOpen AccessBuilding an evaluation infrastructure: capturing feedback at the right time and place(Infrahealth 2017 - Proceedings of the 6th International Workshop on Infrastructure in Healthcare 2017, 2017) Brandrup, Morten; Østergaard, Kija LinInfrastructuring does not happen by itself; it must be supported. In this paper, we present a feedback mechanism implemented as a smartphone-based application, inspired by the concept of infrastructure probes, which supports the in situ elicitation of feedback. This is incorporated within an evaluation infrastructure which enables clinicians to collaboratively evaluate IT system usage and related work practices. Access to the collected feedback is given through a central online repository presenting the feedback and analysed collaboratively. We describe this through a case where nurses collaborate by the means of electronic whiteboards on the infrastructuring of a procedure of patient transfer from an intensive care unit to a general ward.
- Text DocumentOpen AccessCare coordination with a patient centred plan(Infrahealth 2017 - Proceedings of the 6th International Workshop on Infrastructure in Healthcare 2017, 2017) Vuokko, Riikka; Mäkelä-Bengs, Päivi; Karsten, HelenaIn Finland, a standardized data structure for continuous health and care planning is implemented as a Health and Care Plan (HCP) module in all electronic health record systems (EHR). The structure was initially published in 2011 and gradually implemented in the various EHR systems. In this study, the focus is on comparing the specifications of the data structure and the responses to a spring 2016 survey. We analyse the HCP as a representation that is interpreted in different contexts and for different purposes by those involved. The interactionist theory by Strauss (1993) is used as the lens to discern dualistic dimensions of interpretations. We found these dimensions: consensus vs. dissent, old vs. new, single vs. multiple, clearly imagined vs. unclear, and unchanging vs. changing. The implications of these for HCP use and development are discussed.
- Conference PaperOpen AccessCareFox: An Interactive Learning Application for Care-Students(Infrahealth 2021 - Proceedings of the 8th International Conference on Infrastructures in Healthcare 2019, 2021) Unbehaun, David; Aal, Konstantin; Richert, Viktoria; Wulf, VolkerDemographic 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.
- Text DocumentOpen AccessChallenges and Opportunities of Health and Care Co-production with Social Media: a Qualitative Study(Infrahealth 2017 - Proceedings of the 6th International Workshop on Infrastructure in Healthcare 2017, 2017) Daneshvar, Hadi; Anderson, StuartFuture of health in EU faces the triple challenges of ageing, fiscal restriction and inclusion. Co-production offers ways to manage informal care resources to help them cater for the growing needs of elderly people. We investigate the opportunities and the challenges in use of Social Media (SM) as an enabler of co-production in health and care. In order to do this, we conducted a qualitative study using interviews and online observations of activities of professional carers, voluntary organisations and informal carer. We found that particular types of SM are currently used to enable co-production through coordination and communication across boundaries. Particularly Twitter and Facebook are used to connect carers, disseminate information and invite volunteers. However, there are still many other types of SM which are rarely used in this sector due to their limitations. Nevertheless, carers showed interest in using systems which help them to engage people in shaping of services, sharing of experiences and encouraging care activities.
- Conference PaperOpen AccessCo-designing infrastructures(Infrahealth 2019 - Proceedings of the 7th International Conference on Infrastructures in Healthcare 2019, 2019) Brodersen, Søsser; Pedersen, SigneThe paper builds on an ongoing research project striving to reduce hospitalization of elderly citizens with dementia (ECwD). In the research project sensor technologies are used to gather large amounts of data to speak on behalf of the ECwD about change in their behaviour. But in order for the data to create value, network-building efforts made by the project researchers is needed, as the case illustrate. Inspired by the framework of partici- patory infrastructuring we illustrate how front-stage as well as back-stage activities leads to negotiations and translations of concerns and data in a process of network-building to- gether with a multiplicity of users and other actors such as ECwD, their loved ones, care- givers, sensors, researchers, municipalities, companies and nursing homes.
- Text DocumentOpen AccessComplex integrations in health care(Infrahealth 2017 - Proceedings of the 6th International Workshop on Infrastructure in Healthcare 2017, 2017) Bjørnstad, Camilla; Christensen, Bente; Ellingsen, GunnarIntegrations in health care are hard to manage in practice due to their complex organizational realities. To categorise the integrations as syntactic, semantic or pragmatic may help to better plan the process in developing them, and deciding how to manage them in a good way and hence obtain well-functioning integrations.
- Conference PaperOpen AccessData Work in Healthcare: An Ethnography of a BI Unit(Infrahealth 2021 - Proceedings of the 8th International Conference on Infrastructures in Healthcare 2019, 2021) Pedersen, Asbjørn Malte; Bossen, ClausIn 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.
- Conference PaperOpen AccessDemocracy and the politicization of personal health data: the Norwegian Smittestopp case(Infrahealth 2021 - Proceedings of the 8th International Conference on Infrastructures in Healthcare 2019, 2021) Brown, Katherine S.M.In early 2020, at the onset of the coronavirus pandemic, many countries developed and introduced contact-tracing apps. These apps use one or more of several cell phone capabilities to notify citizens when they should enter self-quarantine because of close contact with an infected individual. Norway released a contact tracing app called Smittestopp in April 2020 which, though initially widely used, was also met with criticism for the way it handled personal health data. Shortly after Amnesty International issued a press release calling the app a surveillance technology, it was rescinded, and a different solution developed. This paper discusses Smittestopp as an example of the politicization of personal data in the context of a state of exception, in this case the covid-19 pandemic. The combination of the politicization of personal data and a miscalculation of how long the pandemic might last contributed to the app’s negative reception both domestically and internationally. The paper argues that while the case did present a short-term challenge to Norway’s democratic institutions, the context of the state of emergency coupled with other actions the Norwegian government has taken to curb infection rates indicates that these challenges were temporary and not a serious threat.
- Text DocumentOpen AccessDeveloping Rural Healthcare Services: How to Create Efficient Services Using Service Design Methods(Infrahealth 2017 - Proceedings of the 6th International Workshop on Infrastructure in Healthcare 2017, 2017) Alhonsuo, Mira; Miettinen, Satu; Marttila, HennaThis paper presents a workshop model that can be used to develop digital healthcare services in rural communities. The workshop model is based on a case study done in South Africa in the context of health-related information and communication services. Participants in this case study were semi-trained home-based health caregivers working in rural communities. The research was structured around design methods drawn mainly from the service design field that enable user participation in the development process and that create a common understanding and mission through increased empathy among participants as well as co-creative flows while working together. The primary outcome from the case study was a workshop model, which focused on investigating and developing solutions to address the most important caregiver needs during a typical working day. This leads to interactions, which increases empathy among the participants. The goal of the case study was to design a mobile application that makes the caregivers’ services more efficient. This research is part of the Critical Communication, Safety and Human-centered Services of the Future (CRICS) project, which runs from 2016–2017, and which is funded by Tekes, the Finnish Funding Agency for Technology and Innovation. It was conducted in cooperation with Cape Peninsula University of Technology (CPUT), Cape Town, South Africa
- Text DocumentOpen AccessEmerging versions of patient involvement with Patient Reported Outcomes(Infrahealth 2017 - Proceedings of the 6th International Workshop on Infrastructure in Healthcare 2017, 2017) Langstrup, HenrietteIt is a central argument in the growing Danish PRO-arena, that a large-scale collection of PRO from patients in the Danish Healthcare system will pave the way for more genuine patient involvement in clinical decision-making, quality management and governance of the health services. In this paper I discuss how patient involvement is being (re)configured when increasingly connected to national visions of participatory healthcare. A central discussion centers on ‘meaningful use’ of patient-generated data promoting patients’ expectations and experiences as a criterion for how to proceed with the national use of PRO. But how do assumptions of what constitutes meaning for patients interact with the kinds of roles that patients are expected to take on with PROtools? What forms of participation are assumed to be meaningful and thus good and which are not? In sketching emerging versions of patient involvement with PRO, I want to point to the need for further empirical exploration of how patients and professionals engage with PRO in specific daily practices and to stimulate a general discussion of all too simple normativities of the so-called ‘participatory turn’ in healthcare. I draw on empirical insights from an ongoing study of establishment of a national initiative for systematic collection of PROs in Denmark.
- Text DocumentOpen AccesseScience Insights to Inform Infrastructure for Accountability of Healthcare(Infrahealth 2017 - Proceedings of the 6th International Workshop on Infrastructure in Healthcare 2017, 2017) Pine, Kathleen H.Healthcare organizations and providers are being held accountable for the care they give and for their processes of improving care safety and quality to an unprecedented degree. In countries around the world, there is a pressing need to develop infrastructure for accountability of healthcare to support performance measurement and reporting activities. Yet, little research exists on the design, development, management, or governance of infrastructure for accountability in healthcare, nor on practices of data sharing and reuse that are central to healthcare performance measurement. This paper draws on literature on data sharing and cyberinfrastructure for eScience to identify key concepts from research on supporting collaborative scienctific practice to inform research on practices and infrastructure for healthcare accountability.
- Text DocumentOpen AccessEvolving relations between the practices of nurses and patients and a new patient portal(Infrahealth 2017 - Proceedings of the 6th International Workshop on Infrastructure in Healthcare 2017, 2017) Kensing, Finn; Lomborg, Stine; Moring, CamillaThe paper offers preliminary reflections on a patient portal that is part of a glocal digital infrastructure – an EHR - currently being implemented at 18 hospitals in two of the five Danish regions covering more than half of the population. We focus on the evolving relations between the technology and the practices of nurses and patients in a rehabilitation program after a blood cloth, with a specific interest in how the rehabilitation infrastructure promotes clinical governance and patient empowerment. Our analytical lens is that of patient empowerment, understood broadly as the patient’s capacity for and experience of self-care within the infrastructure. This, we contend, may be seen as a specific and increasingly important aspect of clinical governance.
- Text DocumentOpen AccessExamining practices for remote care in in different infrastructural configurations(Infrahealth 2017 - Proceedings of the 6th International Workshop on Infrastructure in Healthcare 2017, 2017) Grisot, Miria; Kempton, Alexander Moltubakk; Aanestad, MargunnIn this paper, we report from ongoing research on two cases on the use of telecare solutions for remote patient monitoring in Norway. Our analytical focus is on the practices of the nurses working in the remote care services and how the practices relate to the infrastructural configurations in which they are situated. By infrastructural configuration we refer to the organizational structure, service design, and technological solution. Specifically, we focus on three aspects emerging from the analysis of nurses’ practices: the interrelation of care and coordination of work, the fragmentation of information and the constitution of patients.
- Conference PaperOpen AccessExpanding hospital infrastructures: boundary resources for peripheral actors(Infrahealth 2019 - Proceedings of the 7th International Conference on Infrastructures in Healthcare 2019, 2019) Vassilakopoulou, Polyxeni; Øvrelid, Egil; Aanestad, MargunnFostering 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.
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