Cristiano Storni

Design challenges for ubiquitous and personal computing in chronic disease care and patient empowerment: a case study rethinking diabetes self-monitoring

Abstract This paper aims to raise issues concerning the design of self-care technology, which supports an increasing number of individuals’ chronic disease in everyday life. It discusses the results of an ethnographic study that exposes the intricacies and practicalities of managing diabetes in everyday life, and informs the patient-centric design of a diabetes journaling tool. It also sheds light on some everyday chronic self-care practices and suggests how to re-think some of the assumptions and connotations of the current medical model and the traditional role of the patient, which is not always fully appreciated in the design of ubiquitous and personal technologies for the patient. In particular, the analysis covers: the open-ended and uncertain nature of chronic care, the wide inter- and intra-variability of patients’ conditions and attitudes towards the disease, and the need for more symmetrical interactions and consultations with medical experts. These findings informed the design of a proof of concept called Tag-it-Yourself (TiY), a mobile journaling tool that enables the personalisation of self-monitoring practices. A final discussion on the actual use of the TiY tool is also offered along with general implications for the design of self-care technologies and an outline of future directions for research in this area.

Produsage in hybrid networks: sociotechnical skills in the case of Arduino

In 1this paper we investigate produsage using Actor-Network Theory with a focus on (produsage) skills, their development, and transformation. We argue that produsage is not a model that determines a change in the traditional consumption/production paradigm through a series of essential preconditions (such as open participation, peer-sharing, or common ownership). Rather, we explain produsage as the open-ended result of a series of heterogeneous actor-networking strategies. In this view, the so-called preconditions do not explain produsage but have to be explained along with its establishment as an actor-network. Drawing on this approach, we discuss a case study of an open hardware project: the Arduino board, and we develop a perspective that maps the skills of human and non-human entities in produsage actor-networks, showing how skills are symmetrical, relational, and circulating.

Patients' lay expertise in chronic self‐care: a case study in type 1 diabetes

The impact of chronic diseases in our society is growing. The idea of self‐care generates understandable enthusiasm and is seen as a natural answer. It is important to develop an understanding of self‐care practices that goes beyond a clinical understanding of the disease and that acknowledges everyday practicalities, and the perspective of the patient.

Notes on ANT for designers: ontological, methodological and epistemological turn in collaborative design

This article aims to explore how ANT might help us to rethink collaborative and participatory design (C&PD) practices through converting Bruno Latours call for risky accounts to a call for design things together. What if ANT starts to be in the business of designing new pieces of technology and not just actor-network accounts of them? What would the design process and its outcomes look like? In response to these questions and to the challenge of co-habitation as vital condition for our technical democracy, I propose three turns in C&PDs. The first is ontological and suggests to design actor networks and to look for ways to make these networks visible. The second is methodological and suggests reimagining co-design as actor networking in public, aided by a much-needed cartography of design. The last is epistemological: it is concerned with what knowledge should inform action in the design process, and it proposes to the idea of the designer as an agnostic Prometheus.

Diabetes self-care in-the-wild: Design challenges for personal health record systems and self-monitoring technologies

Purpose – The purpose of this paper is to raise issues about the design of personal health record systems (PHRs) and self-monitoring technology supporting self-care practices of an increasing number of individuals dealing with the management of a chronic disease in everyday life. It discusses the results of an ethnographic study exposing to analysis the intricacies and practicalities of managing diabetes “in the wild”. It then describe and discuss the patient-centric design of a diabetes journaling platform that followed the analysis. Design/methodology/approach – The study includes ethnometodological investigation based on in depth interviews, observations in a support group for adults with type 1 diabetes, home visits, shadowing sessions and semi-structured interviews with a series of medical experts (endocrinologists, general practitioners and diabetes nurses). Findings informed the design of a proof-of-concept PHR called Tag-it-Yourself (TiY): a mobile journaling platform that enables the personalization of self-monitoring practices. The platform is thoroughly described along with an evaluation of its use with real users. Findings – The investigation sheds light on a series of general characters of everyday chronic self-care practices, and how they ask to re-think some of the assumptions and connotations of the current medical model and the traditional sick role of the patient – often unreflectively assumed also in the design of personal technologies (e.g. PHR) to be used by patients in clinically un-controlled settings. In particular, the analysis discusses: the ubiquitous nature of diabetes that is better seen as a lifestyle, the key role of lay expertises and different forms of knowledge developed by the patient in dealing with a disease on a daily basis, and the need of more symmetrical interactions and collaborations with the medical experts. Research limitations/implications – Reported discussions suggest the need of a more holistic view of self-management of chronic disease in everyday life with more attention being paid on the perspective of the affected individuals. Findings have potential implications on the way PHR and systems to support self-management of chronic disease in everyday life are conceived and designed. Practical implications – The paper suggests designers and policy makers to look at chronic disease not as a medical condition to be disciplined by a clinical perspective but rather as a complex life-style where the medical cannot be separated by other aspects of everyday life. Such shift in the perspective might suggest new forms of collaborations, new ways of creative evidence and new form of knowledge creation and validation in chronic self-care. Social implications – The paper suggests re-thinking the role of the patient in chronic-disease self-management. In particular, it suggests giving more room to the patient voice and concerns and suggest how these can enrich rather than complicate the generation of knowledge about self-care practices, at least in type 1 diabetes. Originality/value – The paper sheds light on everyday intricacies and practicalities of dealing with a chronic disease. Studies of self-care practices that shed light on the patient perspectives are sporadic and often assume a clinical perspective, its assumptions (e.g. biomedical knowledge is the only one available to improve health outcome, doctors know best) and implications (e.g. compliance, asymmetry between the specialist and the patient).

The problem of de-sign as conjuring: empowerment-in-use and the politics of seams

In this paper, I articulate a critique of design as conjuring (design as de-sign) and I argue that it is incompatible with the idea of user empowerment. In particular, I discuss the idea of empowerment-in-use and I highlight the role of design seams and scars in supporting it through appropriation and design-after-design. To support this argument, I draw on some recent contributions in Participatory Design (PD), Human Computer Interaction (HCI), New Media Studies, and Science and Technology Studies (STS), and I discuss three illustrative case studies from the area of digital Do-it-Yourself (DIY). I argue that restoring the sign in de-sign through design seams and scars can be a way to explore different forms and perhaps deeper levels of critical engagement and participation supporting empowerment.

Designing things together : intersections of co-design and actor-network theory

This special issue brings together nine papers that explore in different ways the interesting space at the intersection of co-design and actor–network theory. The papers consolidate a tradition of multidisciplinary design research with contributions from science and technology studies (STS) in which design is seen as a social and political activity playing a vital role in the shaping of our societies. Design is becoming less confined to the design studio with well-identified stakeholders. It takes new forms as public interventions and as explorations ‘in the wild’. This means that it becomes more difficult to understand the scope and limits of design interventions and, therefore design research needs new tools to address and reflect these changes. Similarly, actor-network theory (ANT) has moved out of its traditional concern with STS that is critical of modernist separations (such as object/ subject and nature/culture), to a concern with reassembling the social and building a common world, where democratic, ecological and political issues permeate everyday life, and design and technology are an integral part of it. Designing things together has become for us as editors, a label to identify this overlap between co-design and ANT and to support a shared agenda towards technical democracy that helps us to further ‘unpack’ the coin co-design. The papers in this issue look at a series of intersecting topics and, even if they approach and use ANT in different ways, they all contribute to a more systematic exploration of how to design things together. The authors are concerned with the relationship between design and democracy (Binder et al., Storni), participation (Palmas and Von Busch; Andersen et al.), making things public (Schoffelen et al.; Stuedahl and Smørdal), new collective forms of design experiments (Tironi and Laurent; Lindstrom and Stahl), and new ways to look at and talk about codesign (Akama). The papers reaffirm a non-modern way of thinking about co-design that is critical of the idea of the designer as a hero (or user as a king), the idea of participation being unproblematic or taken for granted, the clear-cut opposition between design and use (designer and user, design and research), the idea of design objects as stand-alone outcomes, or that of collaborating entities pre-existing the design process. This special issue opens with two research papers that view ANT as a means of rethinking collaborative design practices towards a design democracy. Binder et al discuss how ANT can reinvigorate participatory design as democratic design experiments between parliament and laboratory. Critical of the obsession with objects dominant in design and of human-centeredness, the authors articulate the idea of designing ‘things’ as socio-material assemblies of public concerns and issues that evolve over time. Addressing Latour’s call for co-habitation, Storni proposes a translation of ANT from an STS tool to produce risky accounts, to a design tool to design things together. In this translation, Storni proposes three turns for design: ontological, methodological and epistemological. The first argues for the design of actor networks. The second suggests designing by means of actor networking in public, and thus calls for a much-needed cartography of co-design. The third suggests moving from the idea of the designer as the prince of a network to the designer as

A personal perspective on research through design

This forum highlights conversations at the intersection of design methods and social studies of technology. By highlighting a diversity of perspectives on design interventions and programs, we aim to forge new connections between HCI design and communication, science and technology studies, and media studies scholarship. --- Daniela Rosner, Editor

Adapting design probes to explore health management practices in pediatric type 1 diabetes

We used Design Probes (DP) as a communication tool supporting designers to learn about users, collecting selfdocumentation data from children and parents about their everyday chronic disease management. DP are also applied as alternative strategies to perform ethnographic study in a domestic environment and to elicit inspirational data for the design of an educational interactive eBook for newly diagnosed children with type 1 diabetes mellitus (T1DM). Eight probe activities were designed for children between the ages of 812 years who have diabetes and their caregivers, which were then distributed to seven families. The main issue discussed in this paper is the adaptation of the DP to the users (children and parents) and the results produced by participants who used them.

Pervasive Computing Support in the Transition towards Personalised Health Systems

This paper discusses pervasive computing work in the transition from traditional health care programs to personalised health systems pHealth. A chronological guided transition survey is discussed to highlight trends in medicine describing their most recent developments about health care systems. Future trends in this interdisciplinary techno-medical area are described as research goals. Particularly, research and technological efforts concerning ICTs and pervasive computing in healthcare and medical applications are presented to identify systems requirements supporting secure and reliable networks and services. The main objectives are to summarise both the pHealth systems requirements providing end-user applications and the necessary pervasive computing support to interconnect device-based health care applications and distributed information data systems in secure and reliable forms, highlighting the role pervasive computing plays in this process. A generic personalised healthcare scheme is introduced to provide guidance in the transition and can be used for multiple medical and health applications. An example is briefly introduced by using the generic scheme proposed.