Call for Participation

Second International workshop on

“Personal Health Records and patient-oriented infrastructures”

Building technology, shaping (new) patients and healthcare professions

Healthcare systems of the western countries are invested by significant transformations under the growing pressure of demographic and epidemiological changes. In a landscape characterized by the growth of elderly people and the rise of chronic conditions they are called to modify not only what they offer but also the very nature of their role. Originally built around the care of acute cases and long-term institutional stay, healthcare sectors are promoting new models of care based on prevention, shorter hospital stay, patient education and empowerment, self-management of chronic condition.

In this context Personal Health Records (PHRs) and patient-oriented infrastructures are often regarded as transformative tools to help reshape the existing healthcare systems. These technologies, have rapidly come to be considered as the cornerstones of new forms of patient-centred services redesigned around empowered citizens willing to commit themselves to a proactive style of health and wellness self-management. This has led to the flourishing of implemented systems designed by research institutions, healthcare authorities and private vendors.  Despite some significant failures (i.e. GoogleHealth, NHS' MySpace) the trend does not seem to be close to change in the near future.

At a closer inspection, though, the acronym PHR covers for many diverse systems, designed having in mind quite different ideas of what patients are or should be. These technologies, in fact, are not neutral tools. Rather, they carry the inscriptions of the desires of designers and stakeholders. They embody the visions of healthcare services and the expectations about each actor’s behaviour. They are imbued with the ethics and morals of new forms of patienthood and in their features and limitations are hardcoded the signs of desired patient-doctor relationship and technologically-mediated therapeutic alliance. At the same time and despite the intentions of designers, these systems are reshaped by the use of patients as they learn how to take care of themselves, collect and manage health information and experiment new forms of communication within their network of care. In this perspective PHR and patient-oriented infrastructures provide researchers significant standpoints to analyse new forms of patient empowerment and education, the strengthening of traditional relationship with doctors but also the creation of more articulated care networks and, in more general terms, the ongoing transformations of healthcare systems.

In this workshop we wish to offer an arena for discussion about these and related issues to researchers, healthcare and IT professionals, healthcare managers. Topics of particular interest include, but are not limited to:

  • representations of patient role and patient-doctor relationship inscribed in the technological artefacts;
  • the strengthening or the redefinition of patient-doctor relation or healthcare practices brought about by the adoption of PHRs;
  • design process of Personal Health Records and patient-oriented infrastructures;
  • appropriation or unexpected uses of PHRs;
  • new forms of technologically-mediated patient empowerment, education, and patient-doctor communication;
  • the ethic of care and PHR
  • conflict and mediation concerning the use and limitation of PHR and patient-oriented infrastructures;
  • PHRs and their role in the regional-national healthcare infrastructural system

 The first edition of the workshops has resulted in a special issue of IT and People. The organizers and the program committee will seek to publish selected papers from the workshop in an edited book or a journal. More information will be published on the website or provided during the workshop.

Important dates

Submission:                  2 March 2014        10 March 2014

Notification:                 30 March 2014

Registration starts:        1 April 2014

Workshop:                    19-20 June 2014