Reassembling Health: exploring the role of The Internet of Things

This workshop was held in 2009 during the Council launch. A report of this workshop is published in the Journal of Participatory Medicine, by Cristiano Storni.

Here you can find a series of slide framing the workshop themes. Here below a conceptual map aimed to provide an open conceptual space to be explored during the workshop.

Map of notions and concepts

Here some further inspirational material distributed to workshop's participants (food for thoughts)

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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 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 partecipation of different ways to experience the disease.



Workshop



This workshop aim 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 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?

Who should attend



As the aim of this workshop is to generate discussion and to collaboratively identify design issues, we would like to encourage attendance from a mix of people at different career stages, both creative practitioners and academic researchers. As interdisciplinarity is an important feature of this workshop, participants from a range of related fields, for example medical domain and patient association, art, philosophy, computer science and design, are welcome to attend.

This workshop is moderated by Cristiano Storni.

Cristiano Storni holds a PhD in Information Systems and Organization and is post-doc research fellow at the Interaction Design Centre at the University of Limerick. He is interested in STS and Interaction Design. In Health Care his research focuses on self-care practices and technology. (http://www.idc.ul.ie/people/cristiano-storni)

He is a convenor of the workshop

THE SHAPING OF PATIENT 2.0. - EXPLORING AGENCIES, TECHNOLOGIES AND DISCOURSES IN NEW HEALTHCARE PRACTICES.

EASST 010 – PRACTICING SCIENCE AND TECHNOLOGY, PERFORMING THE SOCIAL TRENTO, SEPTEMBER 2ND - 4TH 2010

Healthcare systems in Western countries are undergoing profound changes in the organization of services and patient treatment. With an aging population and the increase in chronic diseases there has been a surge in the development of new treatments and a rise in demand for them. Within this scenario, the concepts of selfcare, patient empowerment and choice become increasingly important. The concept of a ‘patient 2.0’ seems to represent an opportunity for healthcare systems to cut constantly increasing costs, while also representing a rapidly growing market for
manufacturers.

One perspective on patient 2.0 is rendered through the rhetoric of technologically empowered citizens able to access, produce, manage and share health-related information, make informed choices in a transparent environment, and self-manage their treatment trajectories. The spread of networked self-care devices may give rise to a scenario where patients are enrolled in larger medical infrastructures that extend into domestic environments. In this case, patients’ participation takes the form of a imposed top-down delegation that may reproduce rather than reduce the marginalization of patients’ perspectives and their lived experiences.

On the other hand, the notion of patient 2.0 evokes a more patient-centric perspective that encompasses the simple notion of patient discipline and the logic of autonomous choice. On this different view, patients self-organize and gather together through social networks. They form associations that collaborate and compete with traditional medical research in the creation of new ways of knowing disease. Patient participation in this case may instead mean renegotiating the terms on which empowerment and patient participation takes place.

In this controversial landscape, patient 2.0 is to be considered an interesting figure in the process of becoming in multiple ways. Already partly performed and acted out (e.g. inscribed in actual health organizations and self-care technology), and partly imagined, idealized and shaped through discursive practices (e.g. enacted in public policies and health products’ advertisements), patient 2.0 draws attention to the
complex and evolving ecology of practices, actors and discourses that reconstitute the network of HC system. The notion of patient 2.0 thus becomes an intriguing lens through which to observe how things are and how they could be otherwise.

We invite submissions to explore and reflect on these issues addressing questions such as:

- How may the complexity of the different perspectives and practices in play be explored and represented?
- What new forms of alignments and conflicts are put into practice and with what consequences?
- How are new 2.0 ICT platforms (e.g. supporting self-care) designed, implemented and used?
- What problems of discipline and governance arise in establishing and realizing the patient 2.0?
- How can we design for the reconciliation of often conflicting definitions of the actors and concerns in play?

Abstracts of no more than 500 words should be sent by email (following website instructions) by 2010 March 15TH.

Convenors

Cristiano Storni holds a PhD in Information Systems and Organization and is post-doc research fellow at the Interaction Design Centre at the University of Limerick. He is interested in STS and Interaction Design. In Health Care his research focuses on self-care practices and technology. (http://www.idc.ul.ie/people/cristiano-storni)

Peter Danholt, PhD, is assistant professor at Information and Media studies, Aarhus University, Denmark.

Enrico Maria Piras, PhD, is a researcher in the e-Health unit of Fondazione Bruno Kessler (Italy).

Alberto Zanutto PhD, is grant holder at the Department of Sociology and Social Research at the University of Trento.


 

 



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