The Chronicler's Web (TCW)

Published by DAN CALLOWAY on 18 December 2009 @ 00:56 UCT (With permission of Council)
by CRISTIANO STORNI, IOTC Workshop 5 Moderator

BRUSSELS, BELGIUM - Cristiano Storni holds a PhD in Information Systems and Organization at the faculty of Sociology in the University of Trento (Italy) and is now a post-doc research fellow at Interaction Design Centre. During his PhD Cristiano has studied Science and Technology Studies (STS), Actor Network Theory (ANT), Social studies of Information Systems (SSIS), Ethnography, Participatory Design and Organizational Studies. His original background is on HCI and Cognitive science (he is graduated at the University of Siena, Faculty of Communication Science). His PhD dissertation – Design in practice: on the construction of objects – is based on extensive ethnographic observations of design practices in different design domains and is based on a socio-technical muldidisciplinary approach. His current research interests concern the social shaping of technology, the concept of appropriation and the future of ICT in different domains such as Health Care, web 2.0, open software and hardware. At IDC, is leading the sociological strand in FutureComm, a national founded research program (PRTLI – FutureComm, Serving Society) aimed to explore the future of ICT services and products.

Since 2009, Cristiano has been a TCP member of:

• Open Design Spaces supporting User Innovation Symposium 2009
• Multiple Way to Design Research Conference 2009
• 2nd Irish Human Computer Interaction Conference – Dublin 2009
• ECIS 2009 Verona

Original call and workshop description

HC systems in western countries are currently undergoing deep changes in the organization and management of health care services and patient treatments.  Aging population and a concerning increase of chronic diseases combine with the development of new treatments and the rising demand of them. The shadow of a coming shortage of human resources and endlessly increasing costs ask for rethinking the systems to minimize hospitalizations, efficiently allocate specialized personnel, and reduce costs.

In this rather dark scenario the notion of patient empowerment, patient choice and self-care generate understandable enthusiasm and become phenomena of increasing importance along with the spread of self-monitoring networked devices, ubiquitous sensors, HC e-infrastructures and social networks. However the migration of technology and information from hospitals and expert practitioners to domestic spaces and lay patients may come at the price of a renegotiation of the relationship between the different perspectives in play. 



What is the role of the IOT in this changing scenario?



Will it reproduce a disease-centric model based on more sophisticated forms of epidemiological control and dominance of biomedical perspectives, or rather will it open up new forms of patient centric collaborations between lay [persons] and experts based on the co-construction of care? In many cases the problem to be faced is well known and the role of IOT might be that of supporting compliance and the work of experts (even if it might limit the active participation of patients). In many other cases we are confronted with different degrees of uncertainties and the IOT should not miss the opportunity to make room for open-ended dialogues that take advantage of the full participation of different ways to experience the disease.



Workshop



This workshop aim [is] to gather different perspectives and expertise to envision future HC scenario by bringing together practitioners from across disciplines.

Participants in the workshop will be invited to explore together possible worlds and how they might be constituted by addressing the role of the Internet of Things in the changing Health care scenario. The general aim is to understand together how the internet of things can shape future patients and HC stakeholders and how they can shape the internet of things. Participant will be invited to discuss scenario and to collaborate in practical design activities aimed to address issues for the future of medical products, services and infrastructures.

The outcome of this workshop will be the identification of challenges and suggestions for designers and policy makers.
Possible question[s] that can be addressed in the workshop:

• How to support compliance in complex treatments (when compliance is the problem, e.g. acute diseases and well-established treatments)?,
• How to support ‘research in the wild’ where patients become active actors in the exploration of new solutions (when things are more complicated as, for instance, in chronic disease, experimental treatments, etc…)?
• How to design instrument to allow experts to better relate to patients; concerns and to allow patients to better relate to the expert perspective?,
• How to give meaning and voice to the patient’s experience of illness, and how to generate collective learning around it?
• How to inscribe the medical and the social together in the Internet of Things? how to inscribe solidarity and social learning in the future of Health Care?

Report of the Results of the Workshop

The workshop ‘Reassembling health: exploring the role of the IOT’ took place at IMAL (Center for digital culture and technology) as part of the event ‘Are you ready for the Internet of Things’  under the sponsor ship of LIFT conference.

Workshop participants come from different background and brought different perspectives on the table (User Centered Design, Sociology, Interaction design, computer science and business). Cristiano Storni (workshop leader) set the frame of the workshop with an opening presentation focused on the role of the Internet of thing in the health care. In particular Cristiano wanted to bring the attention to the actual trend toward self and home care that today is often seen as a possible solution to some of the current problems in HC (shortage of personals, endlessly increasing costs, increasing of chronic diseases, etc…). Cristiano invited participants to explore the set of new possibilities that the Internet of thing can offer but also to reflect on the assumptions and connotations that might be embedded in the design of new self-care and home-care solutions. One of the points Cristiano made was that as soon as medical information, technologies and procedures migrate from traditional institutionalized settings and expert uses to domestic settings and lay use, the traditional biomedical model might become problematic and display serious limitations in addressing patients needs and their perspective. More specifically, it has been addressed that the traditional medical model (based on acute disease treatment, episodic care, biomedical and epidemiological reductionism (e.g. where numbers and measurable facts becomes more relevant than those that cannot be reduced to numbers); a strong and asymmetrical separation between experts and lay (that implies an asymmetry between the expert knowledge and the lay knowledge of the disease); the notion of compliance (clearly reaffirming the dominant position of the medical experts). This model is based on a notion of patient as a rather passive actor often treated as objects within the larger HC system. However, the actual trend toward self- and home-care challenges this model and asks for an holistic approach based on continuous care where patient become active actors in their care. What is the role of the IOT then? In order to provide an instance of the role that the IOT can play and to show the need to reflect on the assumptions embedded in the design of new self and home care products and services, Cristiano introduced the GlowCaps concepts (from Vitality, whose CEO David Rose was supposed to intervene from Boston – unfortunately last minute internet connection problems made this impossible). The GlowCaps concept nicely illustrates the potential of the IOT: it is a pill bottle cap wirelessly connected with a series of devices aimed to act as reminders for pill taking. The glow cap seems to really succeed to improve patient compliance especially when it comes to elderly people. It also notifies compliant behavior to a series of careers such as family members and doctors. However, the notion of the patient inscribed in the concept is still quite traditional (patient as rather passive, medically-centered compliance) and although the GlowCap can be of real help in case of acute disease or where compliance is the real problem, its assumption might also become problematic in different settings (such as in chronic disease) where patients are more active and compliance is not always and everywhere the problem.

The argument was therefore to explore how the future Health Care scenario might move from episodic, asymmetrical, acute disease and control-based interaction to more symmetrical and cooperation-based interactions between the medical experts and the patient. In line with the overall Council philosophy of rethinking the notion of end user, Cristiano has addressed the issue of patient active participation, and asked to reflect and discuss for a more holistic approach to care. This implies recognizing that a turn toward more active and participating patients might come only at the prize to renegotiate the social contract that regulate the interactions between patient and experts today in Western society. (more…)