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

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.

A Literature Review on Cognitive Accessibility

“…The characteristics of the research are summarized in Table 1. Overall, the studies referred to finding barriers in the accessibility and cognitive accessibility fields when using digital services [20][21][22][23][24][25][26]. The study participants varied in each study.…”

“…In most of the studies, the participants were people with some kind of disability and identified as social groups. The study participants were mentally disabled persons [20], cognitive disabilities persons [24], technology developers and students [21,26], visually impaired persons [23] and intellectually disabled persons [22,25]. The studies' subjects varied.…”

“…There were studies related to website barriers and development [20,22], accessible documents [23] and overall accessibility [24][25][26] in all digital service contexts. One study focused more on digital service privacy [21].…”

“…One study focused on the privacy sector and its accessibility challenges [21]. Privacy policy terms and conditions can be difficult to understand for cognitively disabled persons.…”

“…One participant who worked with people with dementia mentioned that they cannot give consent and that this group of people used substitute decision-makers. In this field, participants referred to some guidelines and privacy design, especially to the consent and confirmation process, as being more understandable [21]. In Johansson et al's [20] study, some participants described asking for help to understand web content or web logic as an invasion of privacy, e.g.…”