This project proposes two tools for achieving a balance between surveillance by technological devices and control by / autonomy of patients and nurses with telecare applications.

The researchers looked into a telecare device for patients with COPD. The designers did, due to practical constraints, not pay enough attention to the intended users. They assumed a compliant form of self-management, which did not fit the style that was adopted by patients in consultation with nurses. Paying more attention to such usage practices, with the help of the tools developed, can lead to better innovations.

Current healthcare policy discourses consider self-management as one of the major aims of telecare technologies. The project developed two tools to support responsible innovations in telecare applications for chronic patients:

• A guideline to design for self-management. It enables designers to reflect on which form of patient self-management is desirable to incorporate. The guideline is complementary to the involvement of users (both patients and health care professionals), which helps to gain information on the needs of future users. Both are important for the successful development of telecare services.
• An ethical Constructive Technology Assessment approach (eCTA). It can assist engineers to anticipate and articulate the consequences of telemonitoring technologies for users. Most existing CTA approaches are limited to assessing adverse effects of new technologies and are narrowed down to evaluating a list of pre-defined ethical issues. The key feature of this approach is that the ethical implications of technology are assessed on the basis of an analysis of actual care and use processes, rather than a checklist of given values.

Designers and patients

Development of the two tools was partly based on an empirical study of a telecare system for COPD patients. The researchers investigated how designers dealt with patient control and autonomy, and how patients and nurses react to these inscribed norms. The main findings:

• Designers of the telecare system were highly constrained by available time, money, and other resources, plus the demands of funding agencies. These had a dominant influence on the design process, at the expense of anticipating to the needs and preferences of the end-users (patients and healthcare professionals). An explicit reflection on which form of self-management should guide the design was also absent.
• The resulting telecare equipment - incorporated a compliant form of self-management that disciplines patients to adhere to medical treatment and an activity regime - was not leaving any room for autonomy and control by patients. In contrast, the practices reflected self-management approaches based on collaboration and concordance between patients and health care professionals.
• Patients, supported by nurses, relied on their own embodied experience with managing their illness while using the device. Despite the compliant form of self-management assumed by the designers, they found ways to use it in a way that suited their daily routines.

Interdisciplinary

The research was conducted and supervised by researchers from four different disciplines: science and technology studies, philosophy of technology, biomedical engineering, and computer science. This multidisciplinary context enabled the team to enrich their sociological and philosophical understanding of design-user interactions and to develop guidelines to incorporate these insights into the design of telecare technologies.

telecare, telemedicine, e-health, COPD, COPD, self-management, telemonitoring, technology assessment, autonomy, patient control, chronic patients