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 principle…

Five Challenges for Benefits Management in Complex Digitalisation Efforts – and a Research Agenda to Address Current Shortcomings

Over the past decades a number of benefits realisation (BR) frameworks have been developed. The benefits management model (BMM) is considered to be the most widely adopted and is often seen as a reference for good practice in digitalisation efforts in single organisations. However, this literature provides little support for complex, inter‑organisational efforts. This is problematic, considering that digitalisation increasingly involves multiple organisations. To explore this gap, we studied the phenomenon in a Norwegian inter‑organisational eHealth effort. Based on a qualitative study involving 50 interviews, observations and document analyses, we identify five distinct challenges and sugg…

Introduction

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Augmenting the algorithm: emerging human-in-the-loop work configurations

Abstract How do configurations of humans and algorithms evolve as firms adopt artificial intelligence (AI) capabilities, and what are the implications for work and organization? We explored these questions through a two-year long case study of an organization in the international maritime trade that introduced automated algorithmic support for data analysis and prediction work. Drawing on a human–machine configuration perspective, we found that humans and the algorithm were configured and reconfigured in multiple ways over time as the organization dealt with the introduction of algorithmic analysis. In contrast to replacing human work, the emergent configurations required new roles and redi…

Information Infrastructures and the Challenge of the Installed Base

In this chapter we present the theoretical perspective of information infrastructures, which is used to analyze the empirical cases in the book. In this perspective, information technology is seen as intimately intertwined with organizational structures, procedures and work practices, and as an underlying, supporting and often invisible infrastructure. Information infrastructures are not only local, but shared among distributed actors which can have multiple and different needs and interests. Understanding the complexities and mechanisms involved in the evolution of information infrastructures is at the core of this perspective which challenges traditional management approaches. Instead of …

Information Infrastructures for eHealth

This chapter provides an introductory overview of healthcare information systems, followed by a more detailed discussion on two types of core components in a public eHealth infrastructure: e-prescription solutions and governmental patient-oriented platforms. E-prescription solutions support the electronic flow of information for prescribed medications between prescribers, pharmacies and insurers that handle related payments. E-prescription solutions aim for cost containment, enhancement of patient safety, control over doctors’ prescription patterns and process quality assurance. Governmental platforms for patient- or citizen-oriented eHealth services typically offer patients access to gener…

POLYCENTRIC GOVERNANCE OF INTERORGANIZATIONAL SYSTEMS: MANAGERIAL AND ARCHITECTURAL ARRANGEMENTS

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Transitioning to Platform-based Services and Business Models in a B2B Environment

Given the considerable success of companies such as Apple, Amazon or Airbnb, the term platform is on everyone’s lips today. Accordingly, platforms have long since also found their way into service science. However, mastering the transition from established product-sales-based offerings to platform-based services and business models comes with a multitude of challenges. In a B2B context, incumbent companies need to carefully evaluate how they can benefit from the establishment of platforms, especially in light of the effects on their existing business models and ties to other actors. Hence, we invited scholars with different backgrounds to provide viewpoints on the opportunities and challeng…

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

n 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…

Strategies for Building eHealth Infrastructures

This chapter presents a cross-case analysis of the eleven empirical chapters of the book. We discuss the six e-prescription cases and the five patient-oriented eHealth cases in terms of the initiatives’ scope, starting point, and motivation, and then, we turn to observed strategies towards the installed base for the two types of infrastructures. E-prescription is relatively well-defined in terms of functionality and there are clear interdependencies with existing healthcare applications (e.g. Electronic Health Record systems and Pharmacy systems) as well as with established practices for prescribing, dispensing and reimbursement of drugs. The e-prescription cases illustrate a variety of app…

Collective action in national e-health initiatives: Findings from a cross-analysis of the Norwegian and Greek e-prescription initiatives.

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Digital Transformation through Collaborative Platformization: A Study of Incumbent-Entrepreneur Relations

Enabling openness of valuable information resources: Curbing data subtractability and exclusion

In this paper we investigate how data openness can be made possible in communal settings. We adopt a utility perspective that foregrounds the use value of data, conceptualizing them as “goods.” On the basis of this conceptualization we explore 2 key goods' attributes: subtractability and exclusion. Our theoretical basis is built upon concepts from the theory of the commons, power theorizing, and notions related to data and information. Empirically, we investigate openness in the genetics domain through a longitudinal study of the evolving communal infrastructure for data related to 2 genes influencing women's susceptibility to breast and ovarian cancer (BRCA1 and BRCA2). We follow the conti…

Dealing with Tensions in Technology Enabled Healthcare Innovation: Two Cases from the Norwegian Healthcare Sector

In Chapter 5, Grisot, Vassilakopoulou and Aanestad examine patient-focused ICT applications, which extend traditional health information infrastructures and have the potential to transform the relation between patients and doctors, allowing for a more active patient role. However, new design challenges emerge because it is unclear how existing infrastructures can accommodate novel usage areas, and how they should be modified or even substituted. In this chapter, the authors’ research aim is to examine such challenges, framed as ‘design tensions’ in the context of ICT-enabled innovation processes in healthcare. Building on Information Infrastructure theory, the authors examine how such desig…

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.

Innovation Readiness in Healthcare Information Infrastructures: Key Resources to Enable Collaborative Digital Innovation

This paper describes key requirements for digital innovation readiness in the public healthcare sector. Collaborative innovation models, where internal and external innovators contribute their ideas and solutions put certain requirements to the organization and ICT infrastructure of health organizations. To explore these requirements, we conducted an empirical case study of a collaborative digital innovation project from its concept stage towards implementation. Our study identifies key technical and organizational resources needed to facilitate innovation, and it therefore has implications for what resources and capabilities need to become part of the healthcare information infrastructure …

The Norwegian eHealth Platform: Development Through Cultivation Strategies and Incremental Changes

This chapter describes the conceptualization process, early stage development, and incremental changes in the creation of the Norwegian eHealth platform for patient-oriented services. The platform was launched in 2011 as an information-oriented portal and gradually developed into a complex platform enabling several eHealth services. Some of these services required the linking and reuse of existing components and resources, while other required the creation of novel parts. Overall the process has been driven by strong political will and visions towards making health services more accessible to informed patients. In this chapter we examine this effort as a process of cultivation of the instal…