Enrolling citizens through technology. Laypeople as "junction workers" in new healthcare infrastructures
Dipartimento di Sociologia e Ricerca Sociale Università degli Studi di Trento Trento, Italy
Piras, Enrico Maria
eHealth unit Fondazione Bruno Kessler Trento (Povo), Italy
Among the many transformation in healthcare systems a particular role is played by technological innovation. 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.
Here we present a reflection on the growing role of laypeople in their own care by the analysis of the process of design and prototyping 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, designed to give laypeople 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.
As part of a interdisciplinary team (computer scientists, mathematicians, sociologists) we conducted a preliminary study to identify the health-related needs of ordinary citizens so to create a Personal Health Record (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, to study how people manage their health in their households. We conducted 50 in-depth interviews focusing on a) how people manage their medical information at home, looking for existing strategies to be considered as guidelines in the PHR design and b) how the records are used to build shared account between patients and doctors.
We argue that the rhetoric of patient empowerment underemphasizes the new role and the consequent responsibility of patients/citizens who are progressively charged with the burden of being constantly accountable to healthcare professionals. In this respect, the PHR can be considered as a patient-activated infrastructure which has to be kept working for the healthcare provision to be delivered.
In this paper we reflect on the implication of designing and implementing such a technology with particular attention to the power and responsibility issues tied to it.