Abstract
A device for the in-home detection of nocturnal seizures is currently being developed in the Netherlands, to improve care for patients with severe epilepsy. It is recognized that the design of medical technology is not value neutral: perspectives of users and developers are influential in design, and design choices influence these perspectives. However, during development processes, these influences are generally ignored and value-related choices remain implicit and poorly argued for. In the development process of the seizure detector we aimed to take values of all stakeholders into consideration. Therefore, we performed a parallel ethics study, using “value sensitive design.” Analysis of stakeholder communication (in meetings and e-mail messages) identified five important values, namely, health, trust, autonomy, accessibility, and reliability. Stakeholders were then asked to give feedback on the choice of these values and how they should be interpreted. In a next step, the values were related to design choices relevant for the device, and then the consequences (risks and benefits) of these choices were investigated. Currently the process of design and testing of the device is still ongoing. The device will be validated in a trial in which the identified consequences of design choices are measured as secondary endpoints. Value sensitive design methodology is feasible for the development of new medical technology and can help designers substantiate the choices in their design.
Highlights
Introduction and AimEpilepsy is one of the most common chronic neurological disorders and affects 0.5% of the Western population [1]
The design of medical technology is not value neutral: perspectives of users and developers are influential in design, and design choices influence these perspectives [3]
We aim to do two things: first, we describe stakeholders and their moral values that are relevant to the development and use of the seizure detector
Summary
Introduction and AimEpilepsy is one of the most common chronic neurological disorders and affects 0.5% of the Western population [1]. Despite a rapid increase in pharmaceutical and surgical treatment options, 30% of epilepsy patients have intractable seizures and are faced with the prospect of having to cope with them for a prolonged time, even their entire life. Seizures can be dangerous (falls, injuries as a result of violent movements, confusional wandering) and may evolve into status epilepticus. For this reason, the reliable detection of seizures in an early stage might facilitate timely and adequate care. The reliable detection of seizures in an early stage might facilitate timely and adequate care This is true for nocturnal seizures, when patient supervision is difficult. Seizures occurring during sleep often go unnoticed, especially in patients who sleep alone, and PLOS ONE | DOI:10.1371/journal.pone.0121446 April 13, 2015
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