Inclusive Privacy Control at Home for Smart Health

IoT systems in smart homes present several privacy challenges. While GDPR creates a general duty for data controllers to implement data protection by default and by design, the state-of-the-art in the smart home context is in its infancy. Therefore, further multidisciplinary research is needed to build accountability and trust into home systems via the appropriate design and implementation of legibility, agency and negotiability. To this end, the THRIDI project initiated a community discussion and collaboration among a multidisciplinary group of experts and early-career researchers in design workshops focusing on four use cases: smart health, home security, smart appliances, and smart toys. We report on our design workshops conducted as part of the HDI network plus and British Human-Computer Interaction (BHCI) conference, an interactive, creative session designed to help unbox complex smart home technologies and support multidisciplinary understandings. Our design workshops aimed to understand privacy perceptions and barriers to legibility, agency, and negotiability based on the HDI (Human-Data Interaction) Framework (Mortier et al. 2014), using exercises ranging from card sorting to scenario analysis. Among other use cases, inclusivity issues arise from discussions on health-related technologies in smart homes. Therefore, we present our findings on two smart-health scenarios. Our discussions mainly focus on privacy and the ethical implications of installing, using, and sharing data from smart devices. A key observation in all workshops was the variability in perceptions and expectations of privacy in smart homes even when our workshop participants can be considered more tech-savvy and privacy-conscious than the average user. Understanding this variability is key to understanding the obstacles to providing meaningful privacy control and achieving a more inclusive user agency. To this end, this presentation explores privacy perceptions in smart home settings and highlights the importance of digital inclusion through exploring the transparency and control of data sharing within the space of smart health in both physical and online contexts. Especially, we consider effective ways to exercise agency as users’ privacy preferences and data sharing context change in time (e.g., changing needs for care in a smart home designed for healthcare scenarios). Stemming from these discussions and focusing on user-led design, the presentation concludes with highlighting the importance of multidisciplinarity and inclusivity when developing solutions for smart-home users.

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