Disease or illness? Building and embedding medical classifications in software

The most basic classification issue in health care practices is the different ways lay peple and health care personnel oganize information. While patients represent their medical condition framing them in a narrative that underscores the disruption of their normal state (illness), physicians represent it in terms of their professional knowledge (disease). Disease model has been `embedded` in software packages EMRs (Electronic Medical Records), tools designed around physicians working practices to help them keeping track of the patient`s history. In the last years, though, there is a growing number of the initiatives to promote the use of Personal Health Records (PHRs), patient centered electronic tools aimed at helping citizens to classify, archive and retrive personal medical informations and to share them. In this paper we present a resarch on the building of a PHR, focusing on the classification issues. We consider the PHR as a `technology of accountability` (Suchman et al., 2002), an artifact aimed at building mutually intelligible path of actions between health care systems and patients. In this perspective the PHR is seen as a part of a complex socio-technical system (Berg, 1999) which comprises physicians` work practices, patients` archiving strategies (Moen and Flatley Brennan, 2005), hardware and software. We focused on the existing paper records to understand how people manage their medical information at home, looking for existing strategies to be considered as guidelines in the PHR design (semi-structured interviews, ethnography); how the paper records, as artifacts-in-use, are used to build shared account between patients and doctors (semi-structured interviews, shadowing) At the same time we explored reflexively our own work in order to bring to the fore the complex arrangements made by our research unit to `build` a classification system to be embedded in the technological artifact. One of the authors conducted a participant observation recording the continuous `flowing in` of heterogeneous materials (research data, journal articles, internal meetings, political expectations, medical classifications, software and hardware issues) and their alignement into discursive and material practices (Barad, 1998). Barad, K. (1998), Getting Real: Technoscientic Practices and the Materialization of Reality, in “Differences: A Journal of Feminist Cultural Studies”, 10, 2, pp. 88–128. Berg M. (1999), Patient care information systems and health care work: a sociotechnical approach, “International Journal of Medical Informatics”, 55, 2, 87–101. Moen A. and Flatley Brennan P. (2005), Health@home: the work of health information management in the household (HIMH): implications for consumer health Informatics (CHI) innovations, in “Journal of American medical informatics”, 12, 6, pp. 648-656 Suchman L., Trigg R., Blomberg J. (2002), Working artefacts: ethnomethods of the prototype, in “British Journal of Sociology”, 53, 2, pp. 163-179