Data Security and Privacy in Apps for Dementia: An Analysis of Existing Privacy Policies

Introduction: Despite tremendous growth in the number of health applications (apps), little is known about how well these apps protect their users' health-related data. This gap in knowledge is of particular concern for apps targeting people with dementia, whose cognitive impairment puts them at increased risk of privacy breaches. In this article, we determine how many dementia apps have privacy policies and how well they protect user data. Methods: Our analysis included all iPhone apps that matched the search terms "medical + dementia" or "health & fitness + dementia" and collected user-generated content. We evaluated all available privacy policies for these apps based on criteria that systematically measure how individual user data is handled. Results: Seventy-two apps met the above search teams and collected user data. Of these, only 33 (46%) had an available privacy policy. Nineteen of the 33 with policies (58%) were specific to the app in question, and 25 (76%) specified how individual-user as opposed to aggregate data would be handled. Among these, there was a preponderance of missing information, the majority acknowledged collecting individual data for internal purposes, and most admitted to instances in which they would share user data with outside parties. Conclusions: At present, the majority of health apps focused on dementia lack a privacy policy, and those that do exist lack clarity. Bolstering safeguards and improving communication about privacy protections will help facilitate consumer trust in apps, thereby enabling more widespread and meaningful use by people with dementia and those involved in their care.