Aisling Ann O’Kane, Helena M. Mentis, and Eno Thereska
23 February 2013
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.
In CSCW 2013
Publisher ACM Conference on Computer Supported Cooperative Work
Permission to make digital or hard copies of all or part of this work for personal or classroom use is granted without fee provided that copies are not made or distributed for profit or commercial advantage and that copies bear this notice and the full citation on the first page. To copy otherwise, or republish, to post on servers or to redistribute to lists, requires prior specific permission and/or a fee. CSCW ’13, February 23–27, 2013, San Antonio, Texas, USA. Copyright 2013 ACM 978-1-4503-1331-5/13/02...$15.00.