Protecting the privacy of technology users who have cognitive disabilities: Identifying areas for improvement and targets for change

Virginie Cobigo; Konrad Czechowski; Hajer Chalghoumi; Amelie Gauthier-Beaupre; Hala Assal; Jeffery Jutai; Karen Kobayashi; Amanda Grenier; Fatoumata Bah

doi:10.1177/2055668320950195

Protecting the privacy of technology users who have cognitive disabilities: Identifying areas for improvement and targets for change

J Rehabil Assist Technol Eng. 2020 Sep 30:7:2055668320950195. doi: 10.1177/2055668320950195. eCollection 2020 Jan-Dec.

Authors

Affiliations

¹ School of Psychology, University of Ottawa, Ottawa, Ontario, Canada.
² Children's Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada.
³ Interdisciplinary School of Health Sciences, University of Ottawa, Ottawa, Ontario, Canada.
⁴ Department of Sociology, University of Victoria, Victoria, British Columbia, Canada.
⁵ Factor-Inwentash Faculty of Social Work, University of Toronto, Toronto, Ontario, Canada.
⁶ Baycrest Hopsital, Toronto, Ontario, Canada.

Abstract

Introduction: Information Technologies (IT) may serve assistive roles that facilitate the interaction of people living with cognitive disabilities (CD) within their environments. However, there are some notable concerns related to privacy threats associated with the use of IT. The purpose of this study was to examine how assistive technology developers may best adapt over time to develop their IT to be resilient against threats to privacy. We therefore focused on the following areas: (1) developers' knowledge and practices related to privacy protection; (2) challenges when applying recommended practices, and; (3) preferred channels to acquire knowledge.

Method: We conducted semi-structured interviews with ten technology developers who are members of the AGE-WELL network undertaking research and development of assistive technologies to be used by people who have cognitive disabilities. We used an inductive-deductive method for the analysis of qualitative data to examine participant responses and generate themes related to the study goals.

Results: Principal themes that emerged from the data include practices specific to populations with CD, challenges to obtaining consent to use of information, and preferred channels to acquire knowledge.

Conclusion: We identify areas of focus for developing a knowledge mobilization strategy to improve relevant policies and practices.

Keywords: Privacy; cognitive disabilities; implementation of change; knowledge mobilization; technology development.