User Perceptions of Personal Data in Healthcare: Ethics, Reuse, and Valuation

There has been global concern about how personal data are collected and managed. A focused examination of people's perceptions of their personal data collection and use is relevant, given the growing importance of personal data in the use of modern technologies. This thesis focuses on people's perceptions of their personal data particularly within the health domain. The exploration is carried out from multiple perspectives: ownership; ethics; reuse; and valuation. Future health services that rely on personal data may be developed considering several data ownership, reuse, privacy, and ethical issues. This thesis is conducted with two core objectives: 1) to develop research probes for collecting personal data in the health domain; and 2) to conduct a series of case studies on the perception of personal data using the research probes.

The findings of this thesis demonstrate people's willingness to donate personal data of varying sensitivity levels both for monetary benefits and for social good. Further, it presents insights into personal data management based on empirical investigations using purpose-built research probes complemented by online experiments. Throughout the thesis, I highlight opportunities and challenges that people consider critical regarding the collection, storage, processing, and management of their personal data. In this thesis, I demonstrate that gaining an understanding of user perceptions of personal data can benefit digital services that rely on such data. This thesis also highlights the important role that crowdsourcing marketplaces can play by serving as human-subject pools to contribute a vast amount of data.