The General Data Protection Regulation grants data subjects the legal rights of transparency and intervenability. Ex post transparency provides users of data services with insight into how their personal data have been processed, and potentially clarifies what consequences will or may arise due to the processing of their data. Technological artefacts, ex post transparency-enhancing tools (TETs) convey such information to data subjects, provided the TETs are designed to suit the predisposition of their audience. Despite being a prerequisite for transparency, however, many of the TETs available to date lack usability in that their capabilities do not reflect the needs of their final users. The objective of this thesis is therefore to systematically apply the concept of human-centred design to ascertain design principles that demonstrably lead to the implementation of a TET that facilitates ex post transparency and supports intervenability. To this end, we classify the state of the art of usable ex post TETs published in the literature and discuss the gaps therein. Contextualising our findings in the domain of fitness tracking, we investigate to what extent individualisation can help accommodate the needs of users of online mobile health services. We introduce the notion of privacy notifications as a means to inform data subjects about incidences worthy of their attention and examine how far privacy personas reflect the preferences of distinctive groups of recipients. We suggest a catalogue of design guidelines that can serve as a basis for specifying context-sensitive requirements for the implementation of a TET that leverages privacy notifications to facilitate ex post transparency, and which also serve as criteria for the evaluation of a future prototype. / <p>Paper 2 ingick som manuskript i avhandlingen, nu publicerad.</p>

Los protocolos de investigación médica requieren que los datos y los resultados sean veraces, para poder determinar las acciones más en salud pública. Es por eso esencial la confianza en la inmutabilidad de los datos recolectados y analizados, así como la protección de la información de los sujetos participantes. Este trabajo se basa en el uso de la tecnología Blockchain y la arquitectura Workspace para brindar una plataforma para conducir estos protocolos de forma segura, confiable y transparente. La organización en la que se basa este trabajo tiene más de 30 años en el Perú realizando protocolos de este tipo. La tesis identificó problemas de errores generados por la recolección manual de información, así como en quiénes debían tener acceso a los datos; además, se encontró problemas en la trazabilidad de los cambios en la información; finalmente, se requería una plataforma de acceso a la información desde cualquier lugar, dispositivo, y momento. La tesis analizó las opciones en el mercado y determinó el uso de Blockchain as a Service (BaaS) de Amazon Web Services (AWS), y Workspace de Citrix Cloud y AWS como la solución más adecuada para el proyecto. Se realizaron pruebas en los algoritmos de enrolamiento y recolección de datos, determinando la efectividad de los mismos al haberse detectado los cambios realizados a la información en el 100% de los casos, así como aceptado los enrolamientos por consenso de los miembros de la red Blockchain. Finalmente, se accedió a los recursos del Workspace desde dispositivos Android y Windows 10, desde una red móvil Entel y una red Wifi de casa Movistar con acceso autorizado. / The medical research investigation protocols require that the data collected and results are trustful, in order to decide the best course of actions in public health. Thus, it is essential the data immutability of the information collected and analyzed, as well as the protection of the information of the enrolled subjects. This thesis is based in the use of Blockchain technology and Workspace architecture to provide a platform to conduct research protocols in a most secure, trustful and transparent way. The organization, which this thesis is based, has over 30 year conducting this type of protocols in Peru. This work identified problems in errors caused by manual data collection process, as well as concerns on who should be able to access the patient’s information; furthermore, we found problems in tracing changes in the information through the protocol; finally, it was identified the need for a platform to access data from anywhere, from any device, anytime. We analyzed technology options in the market and decided to use Blockchain as a service (BaaS) from Amazon Web Services (AWS), and Workspace from Citrix Cloud and AWS as the most suitable solution for this project. We conducted test of the Blockchain enrollment and data collection algorithms, finding a 100% effectiveness in all cases analyzed, and the consensus of enrollment by the Blockchain network members. Finally, we successfully accessed the Workspace resources using Android and Windows 10 devices from a mobile network (ENTEL) and a WI-FI home service (Movistar). / Tesis