Reassembling Healthcare: toward a patient-centric approach
(Conference paper, 2009)

Full reference:
Storni, C. and Bannon, L. (2009) Reassembling Healthcare: toward a patient-centric approach, Proceedings of the Healthcare Informatics Society of Ireland 14th Annual Conference, Dublin, Ireland (pg. 8)

IDC members among authors:
Cristiano Storni
Liam Bannon

Abstract:

This paper outlines our research agenda ‘Reassembling Health: toward patient-centric care’, an investigation that examines current Health Care systems approaches and envisions the future. This paper discusses the risks and opportunities associated with the trend towards technologically-enabled and informatized self-care. This trend involves a movement of medical technology and information from specialized settings and expert uses to domestic settings and lay uses.

 

Our analytical approach is broadly socio-technical. This has 2 implications. Firstly, we do not look at technology as a neutral means to an end but as an active element that shapes human activities. Secondly, we do not look at technology in isolation but as entangled in a complex of heterogeneous socio-technical systems. In the context of the current debate about various approaches to socio-technical healthcare, we focus on a patient-centric perspective and examine the way patients  actively shape and appropriate medical technology and information in practice.

 

Through a variety of qualitative methods,[1] we expose to analysis patient self-care practices and patient appropriation of medical information and technology. We show how a patient-centric model may conflict with the mainstream medical model, to the detriment of good care. In particular, we show that technological interventions aimed to empower the patient through self-care technologies and personal health records often fail to meet their intentions, and some times even generate the opposite effect. In our case studies we witness the development of self-care practices that complicate – rather than ease – patient relationships with medical professionals. In some cases, patient self-care practices show real patient empowerment, but only at the cost of reducing the traditional medical control that traditionally tends to marginalize patient experience of the disease in favor or more ‘objective’ data.

 

In a moment of radical change and widespread enthusiasm for the idea of equipping patients with medical technology, personal information systems, electronic health records, etc., we point to the need for a better understanding of how the relationship between the patient and medical expert changes. We note  how medical technology and information impact lay people and how people – conversely – re-shape these technologies in practice. In particular, and with an focus on the patient perspective, we argue for a re-analysis of the dominant medical model because it often does not fit with the objective of  allowing patients take care of themselves.  In contradistinction to the prevailing approach that is concerned with how to overcome patient resistance to adoption of imposed systems, we rather highlight a design perspective for a healthcare system where technology does not reproduce the conflicts and structured asymmetries of the current status quo –  but rather creates room for conflicts to be negotiated, solutions to be explored,  and care to be tuned and experimented on a practical day-to-day basis.

 

Conference presentation available here

[1] Qualitative data has been collected through a series of techniques such as in-depth interviews (with patient with chronic diseases, general practitioners and community pharmacist), ethnographic observations and analysis of patient online forums. Data analysis has been based on grounded theory (Glaser and Strauss, 1967)