The (opaque) practices of taking care of personal health: empowering laypeople through technology
Piras, Enrico Maria
eHealth Unit Fondazione Bruno Kessler Trento (Povo), Italy
Dipartimento di Sociologia e Ricerca Sociale Universitò degli studi di Trento Trento, Italy
We present a reflection on the growing role of laypeople in their own care through the analysis of a new ICT, the Personal Health Record (PHR). According to Medical Informatics, PHR is a web-based technology that will allow everyone to manage, share and access medical records, a tool to create and keep active a personal network of formal/informal caregivers but also an instrument to help creating a new doctor-patient relation. We conducted a preliminary study 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.
We elicited medical narratives, revolving around the existing health records kept at home, to study how people manage their health. We conducted 50 in-depth interviews focusing on a) how people manage their 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 (opaque), 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.
We argue that the rhetoric of patient empowerment underestimates the responsibility of patients/citizens, progressively charged with the burden of being constantly accountable to healthcare professionals.
We also argue that while often considered as results of larger scale decisions, technologies do reshape social roles and redistribute responsibilities among the networks they are part of. The study of the making of health-related technologies, though, can provide a thought-provoking perspective on the healthcare sector and its policies.