JMIR Publications

ABSTRACT

Background:

Parkinson’s disease symptoms are complex, gradually progressive and fluctuate hour by hour. Home-based technological sensors are being investigated to measure symptoms and track disease progression. A smart home sensor platform, with cameras and wearable devices, could be a useful tool to use to get a fuller picture of what someone’s symptoms are like. There is a paucity of information about of how living with such sensors at home feels for people with Parkinson’s.

Objective:

To explore the experience of living with a multimodal sensor platform, including cameras and wearable devices, in a home environment, from people living with Parkinson’s disease. To understand how this cohort found intermittent color video capture, used to validate the passive sensors. To identify suggested controls and limitations which would improve acceptability.

Methods:

A qualitative study with an inductive approach including 12 semi-structured interviews with a cohort of Parkinson’s disease and control participants who had lived freely for several days in a home-like environment while continuously being sensed.

Results:

This study of 12 participant with Parkinson’s disease and 12 healthy volunteer controls found that it is broadly acceptable to use multimodal sensors including wrist-worn wearables, cameras, and other ambient sensors passively in free living in Parkinson’s disease. The sensor which was the least acceptable in this work was the wearable device. There were several suggested controls and limitations suggested relating to future sensor deployment to people’s own homes, especially for cameras. Some behavior changes during this study were noted by the study participants which may have related to being passively sensed. Recording full color video in the home setting for limited periods of time was felt to be acceptable.

Conclusions:

The results broaden the knowledge of what types of sensors are acceptable for use in research in Parkinson’s disease and what potential limitations on these sensors should be considered in future work. The participants’ reported behavior change in this study should inform future similar research design to take this factor into account. Collaborative research study design, involving people living with Parkinson’s at every stage, is important to ensure that the technology is acceptable, and that the data outcomes produced are ecologically valid and accurate.