Do patients want to know who accesses their personal health information?: A questionnaire to university students

摘要

Personal Health Information (PHI) is collected and used by multiple health professionals and multiple information systems, and usually the patient does not know who accesses their information, when and for what purposes. According to USA (HIPAA) and EU legislation (GDPR) a patient has the right to see his/her clinical information and to know who has access to it, however, the process of obtaining all this related information is still time consuming and complicated. We aim to investigate the opinion of university students regarding the existence of a tool to verify whose healthcare providers access their health information. A web-based questionnaire was designed, 33404 university students were contacted and 589 answered it (1.8% response rate). 90.7% of participants recognize that a tool with those characteristics is important, and 71.5% of them agree to use that tool. In general, we can consider that although the vast majority of participants did not show great knowledge about available healthcare legislation (81%) and that about half of respondents do not know about the use of their data by other parties (52%), more than 90% consider important the existence of a tool to view who accesses their health information. We intend to continue research on this topic and design an access control tool that can empower patients to better control their privacy and rights so to address the gaps existing in the area.