International workshop on Personal Health Record 

Personal Health Records and patient- oriented infrastructures 

Empowering, involving, and enrolling patients through information systems: 

Trento, Faculty of Sociology 

via Verdi, 26 

12-13 December 2011

Deadline for abstracts submission: September 30th 2011

Notification to authors: October 15th 2011

Personal Health Record (PHR) has become a popular label to refer to a wide range of patient-controlled information systems aimed at allowing laypeople to access, manage, share and supplement their medical information. Launched in the US at the beginning of the new millennium, PHRs are spreading in Europe (especially in the UK and Scandinavia), where one witnesses an increasing number of experimental systems that vary to suit the local healthcare context. Nevertheless, these technologies appear to be in their infancy, as clearly demonstrated by the low rate of PHR actually implemented in real-life settings compared with the (relatively) high numbers of trials.

Whilst there is still little evidence that PHRs may affect healthcare, they are regarded by different actors (policymakers, healthcare managers, patients’ association, doctors) as “holding out great promise” to revolutionize it by reducing medical errors, cutting costs, increasing patient awareness and control over their health, and providing physicians with information in emergency situations – to mention only some of the potential benefits. This new ‘patient role’, proactive and characterized by greater control and responsibility over one’s health, is reinforced by the very existence of an electronic tool, suggesting that these new activities require an information system somehow similar to those used by doctors. The name itself, PHR, recalls the acronyms for the standard healthcare systems – EHR (Electronic Health Record) and EPR (Electronic Patient Record) – and thus affirms that it belongs within the semantic space of professional tools.

PHR systems are becoming the point of convergence among different visions concerning the future of healthcare systems characterized by the (desired) emergence of ‘new patients’ willing to share the burden of care and to reshape their relationships with doctors and institutions. Accordingly, PHR can

be considered an interesting lens through which social informatics researchers can examine the tentative transformation of different dimensions of the healthcare sector.

We believe that the time has come to engage in debate on these technologies, which are increasingly presented by policymakers and healthcare systems managers as the “next big thing” in healthcare. It is necessary to move away from a mere technocentric perspective (like the one sometimes provided by medical informatics) in order to bring the actors, their work/daily practices, and the meanings attached to them, back into play.

The purpose of this workshop is to gather together scholars, practitioners and professionals who reflect and work on PHR from different perspectives in different countries. Whilst some interesting socially-informed studies have been already presented and published, to our knowledge no attempt has yet been made to create an opportunity for dialogue among them.

We welcome contributions about, but not limited to, the following themes:

·         the design of patient-centered IS and their integration with professional ones;

·         new forms of computer-mediated doctor-patient or patient-to-patient communication;

·         the evolution of healthcare infrastructures and organizations, and the creation of new representations of health/illness;

·         new forms of alignments and conflicts between self-care practices and institutional treatment;

·         the redefinition of responsibilities and roles within the network of patient-doctors-institution-caregivers.

·         the extent to which patients use PHRs to generate data for use in patient-doctor and patient-patient communication

·         the extent to which health professionals make use of patient-generated data from PHRs

Abstracts (max. 1500 words) should be sent to phr@unitn.it

More information is available at http://events.unitn
.it/en/phr2011 or can be obtained by contacting the organizers at phr@unitn.it

We plan to select the best abstracts and presentations and invite their development into full papers to be submitted for a special issue on the topic. Further information will be given during the workshop or before it on the website.

Organizers:

Silvia Gherardi, Faculty of Sociology silvia.gherardi@unitn.it

Enrico Maria Piras, Fondazione Bruno Kessler piras@fbk.eu

Alberto Zanutto, Faculty of Sociology alberto.zanutto@unitn.it