Making sense with numbers. Unravelling ethico-psychological subjects in practices of self-quantification.

Prevention enthusiasts show great optimism about the potential of health apps to modify peoples' lifestyles through the tracking and quantification of behaviours and bodily signs. Critical sociologists warn for the disciplining effects of self-tracking. In this paper we use an empirical ethics approach to study the characteristics and strivings of the various types of 'ethico-psychological subjects' that emerge in practices of self-quantification by analysing how people and numbers relate in three cases of self-quantification: in prevention discourse, in testimonies from the quantified self (QS) movement and in empirical work we did with people with Diabetes type I and with 'every day self-trackers'. We show that a free subject that needs support to enact its will is crucial to understand the optimism about prevention. In the QS-movement the concern is with a lack of objective and personalised knowledge about imperceptible processes in the body. These subjects are decentered and multiplied when we trace how numbers in their turn act to make sense of people in our empirical study. We conclude that there are many different types of ethico-psychological subjects in practices of self-tracking that need to be explored in order to establish what good these practices of self-quantification might do.

Communal data work: Data sharing and re-use in clinical genetics.

In this article, we examine work with communal data in the context of clinical genetic testing. Drawing from prior research on digital research infrastructures and from the analysis of our empirical data on genetic testing, we describe how data generated in laboratories distributed all over the world are shared and re-used. Our research findings point to six different human-driven activities related to expanding, disambiguating, sanitizing and assessing the relevance, validity and combinability of data. We contribute to research within Health Informatics with a framework that foregrounds human-driven activities for data interoperability.

Data-work for personalized care: Examining nurses' practices in remote monitoring of chronic patients.

Healthcare professionals are increasingly working with data in their care delivery practices. However, there is limited understanding of how data work is enabling novel practices. This study focuses on novel nursing practices emerging in the context of remote monitoring of chronic patients. Specifically, we analyze how personalization of care is achieved in practice through data work. The study is based on a case of a pilot center in Norway where nurses provide remote care to patients by using a specialized system. We examine the practices of the nurses and how data in the form of graphs, alerts, questionnaires and messages are used to personalize care. We identify three main practices of data work for personalization: preparatory work, continuous adjustment and question fine-tuning. Finally, we discuss the pivotal role of nurses' data work for personalized care in remote care.

Friction forces and patient-centredness: Understanding how established logics endure during infrastructure transformation.

In this article, we examine three cases of e-health solutions for patients in Norway. For the analysis of the three cases, we focused on friction forces that come into play when different established arrangements need to change to accommodate novelty. We argue that the design of new technologies was shaped by friction related to institutionalised practices, regulatory regimes and entrenched patient roles. These friction forces connect the past with the present, come into action when aiming for novelty and result to the perpetuation of constituents of the past during change processes. Specifically, the e-health solutions under study were strongly influenced by established healthcare provision logics. All three initiatives expanded the healthcare information infrastructure towards the patients with as little disruption to established arrangements as possible.

Supporting Patient Self-Care: Examining Nurses' Practices in a Remote Care Setting.

The use of information technology in remote care is expected to play an important role in supporting patient self-care. However, there is limited research on how self-care is achieved in practice and what is the role of nurses in supporting patient self-care. In this paper, we present the results from a qualitative case study on the work practices of nurses in remote patient care in Norway. We identify two nurses' practices: self-care as learning analytic skills, and self-care as preventive activation of patients. Our research contributes to the literature on remote care by foregrounding the central role of nurses in patient self-care.

A Lens for Evaluating Genetic Information Governance Models: Balancing Equity, Efficiency and Sustainability.

This paper draws from the literature on collective action and the governance of the commons to address the governance of genetic data on variants of specific genes. Specifically, the data arrangements under study relate to the BRCA genes (BRCA1 and BRCA2) which are linked to breast and ovarian cancer. These data are stored in global genetic data repositories and accessed by researchers and clinicians, from both public and private institutions. The current BRCA data arrangements are fragmented and politicized as there are multiple tensions around data ownership and sharing. Three key principles are proposed for forming and evaluating data governance arrangements in the field. These principles are: equity, efficiency and sustainability.

Participatory Continuing Design: "Living with" Videoconferencing in Rehabilitation.

While much research emphasizes design-before-use, we here study design-in-use. The notion of participatory continuing design is introduced to draw attention to the ongoing work of incorporating information and communication technology into work processes in healthcare institutions. Through an empirical case study of how telemedicine, in the form of videoconferencing, was taken up in a rehabilitation hospital in Norway, the nature of such ongoing experimentation, learning, and redesign is described. When contrasted with traditional design-before-use practices, participatory continuing design differs in terms of its timing, object, process, outcome, and participants. We offer recommendations for how such processes can be supported in healthcare organizations.

eRegistries: governance for electronic maternal and child health registries.

BACKGROUND: The limited availability of maternal and child health data has limited progress in reducing mortality and morbidity among pregnant women and children. Global health agencies, leaders, and funders are prioritizing strategies that focus on acquiring high quality health data. Electronic maternal and child health registries (eRegistries) offer a systematic data collection and management approach that can serve as an entry point for preventive, curative and promotive health services. Due to the highly sensitive nature of reproductive health information, careful consideration must be accorded to privacy, access, and data security. In the third paper of the eRegistries Series, we report on the current landscape of ethical and legal governance for maternal and child health registries in developing countries. METHODS: This research utilizes findings from two web-based surveys, completed in 2015 that targeted public health officials and health care providers in 76 countries with high global maternal and child mortality burden. A sample of 298 public health officials from 64 countries and 490 health care providers from 59 countries completed the online survey. Based on formative research in the development of the eRegistries Governance Guidance Toolkit, the surveys were designed to investigate topics related to maternal and child health registries including ethical and legal issues. RESULTS: According to survey respondents, the prevailing legal landscape is characterized by inadequate data security safeguards and weak support for core privacy principles. Respondents from the majority of countries indicated that health information from medical records is typically protected by legislation although legislation dealing specifically or comprehensively with data privacy may not be in place. Health care provider trust in the privacy of health data at their own facilities is associated with the presence of security safeguards. CONCLUSION: Addressing legal requirements and ensuring that privacy and data security of women's and children's health information is protected is an ethical responsibility that must not be ignored or postponed, particularly where the need is greatest. Not only are the potential harm and unintended consequences of inaction serious for individuals, but they could impact public trust in health registries leading to decreased participation and compromised data integrity.

Analysing the quality of routine malaria data in Mozambique.

BACKGROUND: In Mozambique, malaria is the principal cause of morbidity and mortality. Efforts are being made to increase control activities within communities. These activities require management decisions based on evidence of malaria incidence. Although some data generated are of poor quality, there is little research towards improving the reporting systems. METHODS: An analysis of the quality of routine malaria data was performed in selected districts in Southern Mozambique from August to September 2003. The aim was to assess the quality of the source data in terms of completeness, correctness and consistency across management levels. RESULTS: Analysis revealed primary data to be of poor quality. The diversity of reporting systems with limited coordination give rise to redundancies and wastage of resources. There was evidence of "invention" of data in health facilities contributing to an incorrect representation of malaria incidence. Large, "non-clinical", time-based variations of malaria cases due to reporting delays were also noted, contributing to false alerts of outbreaks.Furthermore, targets established in the national strategic plan for malaria cannot be calculated through the existing systems; this is the case, for example, for data related to pregnant women and children under-five years. DISCUSSION AND RECOMMENDATIONS: The existing reporting system for malaria is currently not satisfying the information needs of managers. It is suggested that one standardized system, including the creation of one form to include the essential variables required for the calculation of key indicators by age, gender and pregnancy status, and to establish a national database that maps malaria by location.

From operating theatre to operating studio--visualizing surgery in the age of telemedicine.

We have conducted a telemedicine project between two of Norway's largest hospitals (Rikshospitalet and Ullevål Hospital) with a focus on image-guided surgical and radiological procedures. Video was broadcast using a 34 Mbit/s ATM network. This resulted in changes in the local work practice to accommodate and facilitate the communication. It also required changes to the surgeon's tasks to improve communication with remote viewers. These changes were not trivial and can be viewed as signs of a shift towards a more public kind of surgery and interventional radiology, brought about by new technology.