The clinician shows Ms. T the data to help her understand why a trial of cognitive-behavioral therapy for insomnia, or at least improving sleep hygiene, may offer several benefits. The clinician advises her to continue to use the app to help assess her response to these interventions and monitor her progress in real time.
Dilemma: The ethics of continuous observation
The rich data captured by digital phenotyping afford many clinical opportunities, but also raise concerns. Among these are 3 significant ethical implications.
Firstly, the same data that may help a clinician learn about what environments are associated with less anxiety for the patient may also reveal personal details about where that patient has been or with whom they have interacted. In the wrong hands, such personal data could cause harm. And even in the hands of a trusted clinician, a breach in the patient’s privacy begs the question: “Should such information be anyone’s business at all?”
Secondly, many apps that offer digital phenotyping could also store patient data—something that currently pervades social media and causes reasonable discomfort for many people. You might have personally encountered this with social media platforms such as Facebook. When it comes to mobile mental health apps, clinicians should carefully understand the data usage agreement of any digital phenotyping app they wish to use and then share this information with their patients.
Finally, while it is possible to collect the types of data outlined in this article, less is known about how to use it directly in clinical care. Understanding for each patient which data streams are most meaningful and which data streams are noise that should be ignored is an area of ongoing research. A good first step may be to begin with data streams that are known to be clinically relevant and valuable, such as sleep and physical activity.9-11
Continue to: Discussion...