Special issue on Personal Health Records

Personal Health Records: Empowering patients through information systems?

Special issue editors: Silvia Gherardi, University of Trento, Italy, Finn Kensing, University of Copenhagen, Denmark, Carsten Østerlund, Syracuse University, USA

Please see also: http://www.itandpeople.org/personalhealthrecords.pdf

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 we can infer by the large number of laboratory prototypes and the rising (even if limited) experiences of PHR systems actually implemented in real–life settings.

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, integrating a fragmented health care system, 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, computers scientist, healthcare professionals and managers 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 in order to bring the actors, their work/daily practices, and the meanings attached to them, back into play.

The purpose of this special issue is to bring together scholars, practitioners and professionals who work on PHR from different perspectives in different countries to take stock of PHR research and practical experiences (review papers), and also invite papers with theoretical reflections based on empirical cases. Whilst some interesting socially–informed studies have been already presented and published, to our knowledge no opportunity for dialogue among them has yet been published.

We welcome contributions about, but not limited to, the following themes:  the design of patient–centered IS and their integration with EHR (Electronic Health Record) and EPR (Electronic Patient Record) systems;  analysis of the transition from laboratories to real–life service: organizational and technological complexities;  new forms of computer–mediated doctor–patient or patient–to–patient communication;  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.

We acknowledge that Personal Health Records are generally designed to be integrated with systems designed for healthcare professionals such as EHR, EMR, and EPR. For this special issue, though, we intend to select only papers that are clearly focused on patient–controlled systems (PHRs) and deal only marginally with professional systems. Timeline for the special issue: Call issued: July 2012.

Deadline for papers: February 1st 2013, reviews returned: June 1st 2013, revised papers submitted: August 1st, 2013, final papers due: November 1st, 2013, special issue published: March 2014



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