Building health infrastructures relying on laypeople (?). Prototyping a Personal Health Record

The crisis of western health care sector is strongly influenced by the reduction of professional caregivers and the increasing costs needed to manage complex institutions such as modern hospitals. Among the many solutions proposed to overcome these problems, two seem to be widely adopted. On the one hand, health organizations have become a privileged locus of technological innovation and ICT’s have been extensively implemented to enhance intra/extra organizational coordination. On the other hand, patients (and their families) are asked to carry a growing burden of health-related activities in order to supplement the formal caregivers, taking part in caring for themselves (i.e. self monitoring, self care). In this paper we discuss the rise of the Personal Health Record (PHR), a yet-to-be-implemented technology that appears to support both patients’ involvement and ICT’s use. PHR is an electronic application through which individuals can access, manage and share their health information. A PHR could be a repository of personal health information (allergies, list of medications, tests) and a part of doctor-patient relation allowing doctors to retrieve data (e.g., disease history) and to write notes or prescriptions on it. In a broader perspective, PHR is seen as a patient-centered information hub, allowing on line access to health care system (e.g., lab tests) but also personal data entry (i.e. glucose level, blood pressure, weight) or even a biological will. While often presented as an electronic tool to empower laypeople, PHR can also be considered as a workaround to solve the problem of information exchange among the many different and (usually) not interconnected electronic records used by clinicians. From this standpoint any single user of a PHR can be considered as the ‘maker’ of a junction of a much broader health infrastructure, bridging the gaps between the existing systems. This infrastructure, though, would rely on laypeople, as it would ‘be activated’ only by their actions. In this respect, to design a viable technology, it is to be understood how and why laypeople would be willing to use such a system. A preliminary study was conducted to identify the health-related needs of ordinary citizens so to create a PHR to be implemented at a regional scale (500.000 people roughly) in northern Italy. 50 in-depth interviews revolving around health management in the household were conducted to understand a) how people manage their paper medical record and b) how the records are used to build shared account between patients and doctors. The analysis show that people, even the non-ill, are implicitly asked by the healthcare system to carry on some tasks to keep the service provision running smoothly. This work, unrecognized as such, is mainly the information management needed to keep all doctors on the same page and the coordination work needed to make doctors job easier. The analysis of the health record keeping patterns led us to identify three different strategies: ‘minimalistic practices’ – when there is a simple unstructured record repository-; ‘erratic practices’ – when health issues require a highly tailored constant rearrangement of data to sustain the medical interventions; ‘network practices’ – when the health problems of an individual are managed by an ad hoc constituted network of caregivers.