Mobile Technology for Adaptive Aging Proceedings of a Workshop (2020) / Chapter Skim
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1 Trust, Privacy and Security, and Accessibility Considerations When Conducting Mobile Technologies Research With Older Adults - Jessica Vitak and Katie Shilton
1 Trust, Privacy and Security, and Accessibility Considerations When Conducting Mobile Technologies Research With Older Adults - Jessica Vitak and Katie Shilton
Pages 1-20
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In 2019, 91 percent of American adults age 65+ owned a mobile phone and 53 percent owned a smartphone (Pew Internet, 2019)
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The privacy and security of mobile data are complex topics. Mobile devices gather a broad spectrum of data about their users, ranging from in-application activity to communications to movement and location data generated by sensors in the phone, and those data are collected in ways that are not always clear to end users.
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. Because of the general risks to privacy and security from mobile devices, the specialized risks of research using mobile data streams, and the particular challenges of doing research with older adults, researchers at this intersection have an obligation to carefully consider their study design, paying particular attention to data collection, analysis, sharing, and storage policies.
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4 1-1 Nested ethical challenges of conducting mobile research with mobile research FIGUREFIGURE 1-1. Nested ethical challenges of conducting older adults.
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for detailed recommendations on creating privacy policies and disclosures, ensuring accessibility of content, notifying end users about changes in data collection practices, sharing data with outside parties, and more. Challenges for Mobile Data Research with Older Adults U.S.
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This is inappropriate for any research but particularly for research with older adults. Because older adults are frequently less experienced users of mobile devices, they may have incomplete mental m odels of what mobile data can be used to infer, who might access that information, and what the real risks of engaging in mobile data research might be.
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With improvements in mobile data collection and analysis techniques, researchers and ethics review boards are debating best practices for obtaining informed consent (see, for example, Vitak et al., 2016, 2017)
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Research with adults has shown that comprehension of standard informed consent processes is frequently low (Nishimura et al., 2013) , and older adults are less likely to fully understand data collection practices involving mobile devices (Choi and DiNitto, 2013; Schreurs et al., 2017)
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This might include the use of large icons or pop-up reminders on the mobile device interface to indicate ongoing data tracking; providing a dashboard for participants to view some or all of their collected data; or providing regular project communications and updates tailored to the research population. In one example of this, Barron and colleagues (2004)
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Addressing Privacy and Security Risks in Mobile Research with Older Adults Practicing data privacy and security by design in mobile data research with older adults involves attention to protecting participants' data at each stage of the data life cycle: collection, storage, analysis, and deletion. We encourage researchers to craft a data management plan (Michener, 2015)
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Even if investigators have taken pains to minimize the amount of PII collected, they should not rely upon deidentification of mobile data as the main privacy or security safeguard, and they should not make inflated promises of confidentiality or anonymity to project participants. Considerations for data storage can impact the data's security.
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Addressing Challenges of Bias in Research With Older Adults For researchers using mobile devices and mobile data collection, concerns extend beyond the privacy and security risks of mobile data. Study design reliant on mobile technology may also introduce issues of accessibility and bias.
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Therefore, we encourage researchers and companies to focus on collaborations that enable academic researchers access to corporate data that would be difficult -- if not i mpossible -- to obtain otherwise. Partnerships with major companies like Apple, Google, and Microsoft could advance research on a wide range of health and wellness outcomes for older adults, improving quality of life both for those aging in place and for caregivers providing assistance as adults age.
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Other organizations and applications have provided similar access to researchers; for example, the online platform PatientsLikeMe has procedures for allowing academic researchers to request access to their data.3 Recognizing that access to corporate data is difficult and may not be possible, nonprofits have begun to develop guidelines and frameworks to help researchers in their evaluation of mobile technologies. One example of this PsyberGuide,4 a nonprofit organization focused on improving mental 2 For more information, see: https://developer.apple.com/healthkit/ and https://www.apple.
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CONCLUSION Performing research with older adults using mobile technologies places researchers and participants at a nexus of complex ethical issues. General concerns about the privacy, security, and accessibility of the mobile data ecosystem are exacerbated by the duty of care researchers owe to participants and the complex challenges of aging.
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Proceedings of the 18th ACM Conference Companion on Computer Supported Cooperative Work & Social Computing (pp.
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. Assessing the competence of persons with Alzheimer's disease in providing informed consent for par ticipation in research.
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. Improving understanding in the research informed consent process: a systematic review of 54 interventions tested in randomized control trials.
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. Ethics regulation in social computing research: Examining the role of Institutional Review Boards.
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