Patients Using Open-Source Disease Control Software Developed by Other Patients

Abstract

Healthcare information systems are traditionally developed within the R&D labs of medical instrumentation providers, software houses, technology consultancy firms, medical faculties and hospitals. Professionals with either medical or IT backgrounds are the perpetual analysts and developers of most health-care information systems on the market. However, we tackle an exceptional variance where patients are themselves creators of their own health-care information systems.

This user-innovation phenomenon was already addressed in academia but mostly by looking at the systems per se or their development. In this paper, we turn to the users by exploring the consumer behaviors of patients using such patient-innovated systems, i.e. we explore the consumer behaviors of patients using open-source disease control software developed by other patients.

In a Netnographic approach we screened the product pages and relevant Internet forums around three open-source projects providing disease control software: GNU Gluco Control, MySHI (My Self Health Information) and PumpDown-load. A rich set of qualitative data was collected from Internet sites and analyzed with the Grounded Theory method. We developed a theory that unveil two key motivations for the use of disease control software: the patients desire for a more active role in managing their diseases, and the patients annoyance with defective by design vendor lock-in mechanisms from the most common products.

Our contributions increase the understanding on the symbolism, meaning, and consumption patterns of this niche consumer group by screening publicly avail-able data on the Internet, with potential implications to the body of theoretical knowledge in healthcare information systems, chronic care management and practitioners within the industry of disease control.