Non-Static Nature of Patient Consent: Shifting Privacy Perspectives in Health Information Sharing

The purpose of the study is to explore how chronically ill patients and their specialized care network have viewed their personal medical information privacy and how it has impacted their perspectives of sharing their records with their network of healthcare providers and secondary use organizations. Diabetes patients and specialized diabetes medical care providers in Eastern England were interviewed about their sharing of medical information and their privacy concerns to inform a descriptive qualitative and exploratory thematic analysis. From the interview data, we see that diabetes patients shift their perceived privacy concerns and needs throughout their lifetime due to persistence of health data, changes in health, technology advances, and experience with technology that affect one’s consent decisions. From these findings, we begin to take a translational research approach in critically examining current privacy enhancing technologies for secondary use consent management and motivate the further exploration of both temporally-sensitive privacy perspectives and new options in consent management that support shifting privacy concerns over one’s lifetime.