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.

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Notes

  1. 1.

    The case study reported on and discussed in this paper was part of the FutureComm project (funded by the Irish HEA PRTLI Cycle 4—http://futurecomm.tssg.org), which investigates the future of Internet technologies in various domains including health care. Within this large research frame, part of the effort has been dedicated to enlightening some of the issues around the growing area of self-care, especially in chronic disease, and to reflect on the future role of design and technology.

  2. 2.

    The World Health Organization (WHO) estimated that in 2000, there were 86,000 cases of diabetes in the Republic of Ireland. This figure is expected to rise to 1,57,000 by 2030. Globally, the WHO counted more than 170 million diabetics in 2000 with an expectation of that figure reaching 360 million in 2030. If current trends persist, it is estimated that as many as one in three adults will have diabetes by the year 2050. The Daily Finance also reports that diabetes is also becoming a global problem, not necessarily associated with Western society lifestyle. In some countries, such as China or India, it will become an epidemic (http://www.dailyfinance.com/story/investing/diabetes-big-pharma-gears-up/19816863/).

  3. 3.

    MINTEL (a global product and market analysis agency) research shows that sales of self-diagnostics in the UK have grown by 40 % since 2000 and will rise by a further 38 % by 2010. Sales of blood pressure monitors have almost doubled in value from 2002 to 2004. The number of adults monitoring their blood pressure has increased by 250 % from 1999 to 2008. Manufacturers’ revenues from medical devices will reach over $5 billion by 2011. Looking to the future, MINTEL predicts a staggering 60 % increase in the market of blood pressure, blood glucose and body fat measuring kits by 2012, with sales expected to reach £158 million, as growing awareness of health issues fuel sales of self-diagnostics. www.marketresearchworld.net/index.php?option=com_content&task=view&id=400&Itemid=48.

  4. 4.

    See Storni and Bannon [12] for a critique of a disease-centric model towards patient-centric health infrastructure (2011). One of the key propositions of their work concerns the way in which, paradoxically, the call for self-care technology in the interests of patient empowerment can ultimately lead to new and more sophisticated forms of enrolment and the disciplining of patients within a traditional medical model that, especially in the context of chronic disease, fails to fully acknowledge the patient’s agency and perspective, and complicates rather than facilitates the establishment of an empowered patient.

  5. 5.

    Diabetes was selected for a series of reasons: first of all, the diffusion of this non-communicable disease is quickly growing throughout society (not only in Western countries, but also globally); the disease is chronic and its management is very challenging as it requires a great deal of effort from the patient and, often, from a series of informal care givers; finally, its management involves a series of pieces of equipment and technological support for self-measuring, self-monitoring and self-medicating, thus providing an interesting case to study the role of technological mediation in chronic self-care. In this sense, it should be noted that although some of the considerations in this paper pertain to diabetes self-management, the general arguments have the potential to be extended to chronic self-care in general.

  6. 6.

    See, for instance, the success of the German diabetes management programme that gives great scope for patient involvement in primary care, Stock et al. [35], Szecsenyi et al. [36].

  7. 7.

    A look at any self-monitoring device today is illustrative of this trend. Measuring and counting physiological values are systematically emphasised to the detriment of paying attention to what cannot be measured. Universal biomedical knowledge is privileged over the experiential in the decision process, thereby reproducing the traditional asymmetry between patients and medical professionals. Similarly, individualistic thinking and autonomy of choice is privileged over dialogue and negotiation (see Mol [37] for a discussion of this logic of choice and the proposition of a much-needed logic of care).

  8. 8.

    Diabetes patients were interviewed for an average of 90 min each.

  9. 9.

    After all, reproducibility is not only a prerogative of experts and the producers of scientific knowledge.

  10. 10.

    For instance, one of our interviewees, who is considered an expert because she had perfect numbers for a long time, developed bulimia and all of a sudden had to start journaling an awful lot of new things that were irrelevant before.

  11. 11.

    TiY source code (https://github.com/ansig/Future2).

  12. 12.

    In this sense, the selection of subjects did not follow a randomised assignment, although it was somehow guided by a series of principles such as the user must have a form of diabetes requiring journaling and monitoring (therefore the focus on type 1); the user must have a certain level of familiarity with the use of a mobile phone; the user falls within the most common age bracket for smartphone owners of 18–50.

  13. 13.

    Signed consent forms were collected under the guidance of the local ethics committee in all three series of tests, and patient data were stored and managed according to the guidelines of the local data protection authority.

  14. 14.

    This might allow us to say that there is an inverse relationship in the tag design style of different patients between tags carefully specified that do not require further notes and tags that are quite generic but complemented with a written note.

  15. 15.

    This could be motivated by the fact that the user knew that they had to return the iPhone after the trial, and also because exporting data from the iPhone was not possible so that all of the users involved continued to use a more traditional paper-based journal along with the TiYtool.

  16. 16.

    The argument made against reducing complex phenomenon to a normative approach can be extended to the very notion of evidence that populates many discourses in contemporary health policy. The question can simply become that of asking who decides when it counts as evidence and what language is used to express this evidence. The risk is that evidence in chronic self-care ends up referring to evidence produced in experimental settings (e.g., clinical trials) that might have little to do with the evidence of actual self-care practices in chronic disease.

  17. 17.

    Although the area of e-fitness and nutritional education is also growing, there is still the tendency to compartmentalise the different aspects of healthy living (also in the sense that devices tracking and monitoring sport activities might not be interoperable with others monitoring food intake or physiological value), or, more importantly, impose a standard, often quantitative, limiting user appropriation.

  18. 18.

    Elsewhere I define such an approach as modest and cosmopolitical [43], or based on a design-for-future-uses approach [44].

  19. 19.

    This point resonates with Hartsock’s [59] standpoint on feminist theory according to which: “…Accurate knowledge must derive from affected communities. […] Knowledge from affected groups is not merely another voice in a relativistic world. Instead knowledge is a counter-hegemonic force introduced by those who are usually excluded from science”.

  20. 20.

    To some extent, this is already a reality on websites like patientslikeme.com [60] and cure-together.com.

  21. 21.

    In their paper promoting the need for participatory medicine, Utley-Smith et al. [61] also noted: ‘Quasi-experimental trials and qualitative mixed-methods studies have been used with increasing sophistication in supplementing or supplanting designs that leave too many questions of the interactions between causality and context unanswered’.

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Storni, C. Design challenges for ubiquitous and personal computing in chronic disease care and patient empowerment: a case study rethinking diabetes self-monitoring. Pers Ubiquit Comput 18, 1277–1290 (2014). https://doi.org/10.1007/s00779-013-0707-6

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Keywords

  • Self-care
  • Chronic disease
  • Patient empowerment
  • Self-monitoring
  • Diabetes