Exploring the Use of Pictograms in Privacy Agreements to Facilitate Communication Between Users and Data Collecting Entities: Randomized Controlled Trial.

BACKGROUND: Privacy agreements can foster trust between users and data collecting entities by reducing the fear of data sharing. Users typically identify concerns with their data privacy settings, but due to the complexity and length of privacy agreements, users opt to quickly consent and agree to the terms without fully understanding them. OBJECTIVE: This study explores the use of pictograms as potential elements to assist in improving the transparency and explanation of privacy agreements. METHODS: During the development of the pictograms, the Double Diamond design process was applied for 3 instances of user interactions and 3 iterations of pictograms. The testing was done by performing a comparative study between a control group, which received no pictograms, and an experimental group, which received pictograms. The pictograms were individually tested to assess their efficacy by using an estimated comprehension of information symbols test. RESULTS: A total of 57 participants were recruited for the pictogram evaluation phase. With the addition of pictograms, the overall understanding improved by 13% (P=.001), and the average time spent answering the questions decreased by 57.33 seconds. A 9% decrease in perceived user frustration was also reported by users, but the difference was not significant (χ24=4.80; P=.31). Additionally, none of the pictograms passed the estimated comprehension of information symbols test, with 7 being discarded immediately and 5 requiring further testing to assess their efficacy. CONCLUSIONS: The addition of pictograms appeared to improve users' understanding of the privacy agreements, despite the pictograms needing further changes to be more understandable. This proves that with the aid of pictographic images, it is possible to make privacy agreements more accessible, thereby allowing trust and open communication to be fostered between users and data collecting entities. TRIAL REGISTRATION: ClinicalTrials.gov NCT05631210; https://clinicaltrials.gov/ct2/show/NCT05631210.

A Blockchain-Based Consent Platform for Active Assisted Living: Modeling Study and Conceptual Framework.

BACKGROUND: Recent advancements in active assisted living (AAL) technologies allow older adults to age well in place. However, sensing technologies increase the complexity of data collection points, making it difficult for users to consent to data collection. One possible solution for improving transparency in the consent management process is the use of blockchain, an immutable and timestamped ledger. OBJECTIVE: This study aims to provide a conceptual framework based on technology aimed at mitigating trust issues in the consent management process. METHODS: The consent management process was modeled using established methodologies to obtain a mapping of trust issues. This mapping was then used to develop a conceptual framework based on previous monitoring and surveillance architectures for connected devices. RESULTS: In this paper, we present a model that maps trust issues in the informed consent process; a conceptual framework capable of providing all the necessary underlining technologies, components, and functionalities required to develop applications capable of managing the process of informed consent for AAL, powered by blockchain technology to ensure transparency; and a diagram showing an instantiation of the framework with entities comprising the participants in the blockchain network, suggesting possible technologies that can be used. CONCLUSIONS: Our conceptual framework provides all the components and technologies that are required to enhance the informed consent process. Blockchain technology can help overcome several privacy challenges and mitigate trust issues that are currently present in the consent management process of data collection involving AAL technologies.

Overview of Policies, Guidelines, and Standards for Active Assisted Living Data Exchange: Thematic Analysis.

BACKGROUND: A primary concern for governments and health care systems is the rapid growth of the aging population. To provide a better quality of life for the elderly, researchers have explored the use of wearables, sensors, actuators, and mobile health technologies. The term AAL can be referred to as active assisted living or ambient assisted living, with both sometimes used interchangeably. AAL technologies describes systems designed to improve the quality of life, aid in independence, and create healthier lifestyles for those who need assistance at any stage of their lives. OBJECTIVE: The aim of this study was to understand the standards and policy guidelines that companies use in the creation of AAL technologies and to highlight the gap between available technologies, standards, and policies and what should be available for use. METHODS: A literature review was conducted to identify critical standards and frameworks related to AAL. Interviews with 15 different stakeholders across Canada were carried out to complement this review. The results from interviews were coded using a thematic analysis and then presented in two workshops about standards, policies, and governance to identify future steps and opportunities regarding AAL. RESULTS: Our study showed that the base technology, standards, and policies necessary for the creation of AAL technology are not the primary problem causing disparity between existing and accessible technologies; instead nontechnical issues and integration between existing technologies present the most significant issue. A total of five themes have been identified for further analysis: (1) end user and purpose; (2) accessibility; (3) interoperability; (4) data sharing; and (5) privacy and security. CONCLUSIONS: Interoperability is currently the biggest challenge for the future of data sharing related to AAL technology. Additionally, the majority of stakeholders consider privacy and security to be the main concerns related to data sharing in the AAL scope. Further research is necessary to explore each identified gap in detail.