Information and Knowledge Management using ArcGIS ModelBuilder

Open Source Disease Control Software Development: The
Role of Patients
Jose Teixeira 1 and Reima Suomi 2
1
Turku Center for Computer Science, Turku, Finland
2
Turku School of Economics, Turku, Finland
Jose.Teixeira@tse.fi
Abstract: Healthcare information systems are traditionally developed in institutional organizations such as
medical providers’ research labs, software houses and hospitals. IT and medical professionals are the perpetual
analysts and developers of most health-care information systems on the market. A new phenomenon is emerging
patients that turn themselves in the creators of new healthcare information systems. For this paper we extend our
previous research on how chronic patients are taking the lead on the open-source development of new
healthcare information systems and its implications for providers of commercial healthcare information systems.
By systemically screening online communities of diabetic patients, we try to aggregate the feedback that those
patients are giving to these new open-source systems. Moreover, we try to answer how different this new opensource
software is from the installed traditional solutions.
Keywords: eHealth, chronic care, patient empowerment, open-source, user innovation
1. Introduction
We have observed an enormous investment in healthcare information systems but organizations
continue questioning the benefits of such investments. Many studies examining the information
systems performance have been far from conclusive (Devaraj and Kohli 2000). Challenges in the
integration and standardization of information systems, the non user-friendliness of many information
systems together with socio-technical and organizational issues are limiting the benefits of
investments in healthcare information systems (Kuhn and Giuse 2010).
It is empirically observable that healthcare information systems are customary developed by IT
corporations supplying healthcare delivery organizations. Medical and IT professionals are the
perpetual developers and analysts of healthcare information systems. It is important to notice that
patients rarely take direct participation in the systems design, analysis and development. Viitanen
(2009) points out the fact that those patients have very limited access to their own health information,
and that current systems do not support interactive collaboration between patients and healthcare
workers. In addition, she remarks that current healthcare systems do not allow clinicians to involve the
patients in their own decision-making process or collect patient’s self-reported impressions of their
clinical status. All this gives an idea that current healthcare services are far away from the patientcentered
healthcare idea.
In our previous research, we introduced and explored a new phenomenon where chronic patients
develop their own small healthcare systems (Teixeira and Suomi 2010). These empowered patients
take the lead, and develop by themselves applications that they perceive useful for their chronic
condition. In a second stage, they publish their software artefacts on Internet as an open-source
project, where they look for other potential users, testers or even developers that could contribute in
project's software development.
Figure 1 illustrates how the studied open-source chronic healthcare software communities evolve.
The creation of a community seems to be always triggered by a patient looking for a solution that
could ease her or his health condition: The open-source community is one place where the patient
could look for a solution. If his or her needs are not well addressed he or she can join the open-source
community by contributing to an existing project steering the development of the product to address
his or her needs. Alternatively, if possessing the necessary skills, he or she can try to develop his or
her own solution turning it public to benefit from contributions of other patients.
A web inquiry on http://sourceforge.net, the most popular web-based software source code repository
revealed 38 projects related with the query “diabetes”. From these 38 open-source software projects
publicly available on the Internet, 14 were actively downloaed with at least one weekly average
download. Many of them supported different insulin pump and glucose meter models. The structured
observation performed by Teixeira and Suomi (2010) identified three open-source healthcare
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