Patients more willing to share mobile mental health data with doctors than family, EHRs

In a small study published in JMIR, patients were more willing to share health data, such as activity and sleep trackers, than personal data, like call logs and location.
By Laura Lovett
03:33 pm

While smartphones are yet to replace the eyes as the window into the soul, there is a budding conversation around the technology serving as window into an individual’s wellbeing. Biomarkers from smartphones, such as GPS, usage and physical activity, are now being used by providers and employers as an indicator of mental health.

Patients' willingness to share passive smartphone data varies significantly depending on the recipient and what exactly is being shared, according to a new study published by JMIR

Patients reported being more open to sharing health data, such as activity logs, than personal data, like conversation logs. The study also found that patients are more willing to share personal data with doctors than with their families or EHR systems.

“The comfort level in sharing sensed data was dependent on both data type and recipient, but not individual characteristics,” authors of the study wrote. “Given the identified differences in comfort with sensed data sharing, contextual factors of data type and recipient appear to be critically important as we design systems that harness sensor data for mental health treatment and support.”


Researchers surveyed participants about their comfort level with sharing six types of sensor data to three data recipients.

On average, patients are more willing to share health data like sleep, mood and physical activity logs than personal data such as communication logs, GPS and social activity. 

Patients are less likely to share data with families than their doctors. For example, 89% of participants are willing to share their sleep data with a doctor, compared to 64% who are willing to share it with family members. For location data, 57% said they would be open to sharing it with doctors, but just 46 percent are willing to share it with family.

“Sleep, mood, and physical activity data types may closely align with doctor-patient information norms, as they are often discussed with providers,” authors of the study wrote. “On the other hand, the data types that participants were least comfortable in sharing — communication logs, location, and social activity — are not commonly discussed with doctors. Thus, discussing these data types may violate existing norms and therefore be less willingly shared with providers.”

Results also showed that participants are less likely to share data with an EHR than their doctor in every category. However, patients are more likely to share information with an EHR than their family members in every category except for communication logs. 


The study included 211 participants. Of those, 81 percent were women and the average age was 38 years old. 

Researchers collected the data from patients who were participating in a six-week personal sensing study, where they had to download an app that collected passive data and daily questionnaires. 

To participate, candidates had to be over the age of 18 and speak English. Researchers excluded individuals diagnosed with a psychotic disorder, substance abuse disorder or bipolar disorder. Study participants were also asked to answer questions about their anxiety and depression. 

Participants were asked to answer questions about their comfort level with sharing six types of sensor data with doctors, EHRs and family members. They were able to answer on a scale of 0 to 3 their comfort levels, with zero being not comfortable with sharing to three being the most comfortable. Researchers deemed it inappropriate to treat the data as continuous; instead, they coded a response of 0 or 1 as not comfortable and a response of a 2 or a 3 as comfortable. 


Using smartphone data as a way to measure mental health and behavior has become increasingly popular.

One popular startup in the space, called Mindstrong Health, was founded in 2014 by former NIMH director Dr. Thomas Insel and Dr. Paul Dagum, who patented the first digital measure of the central nervous system. In June, the company raked in $15 million in Series B financing, bringing the company’s total funding to $29 million. 

On the provider side, Dr. John Torous who heads up the digital psychiatry division of the department of psychiatry at Beth Israel Medical School, and his team are working on a tool that will allow patients to give their provider access to phone information, such as if they are answering text messages, GPS of their activities and phone call records. 

More studies are starting to examine the feasibility of such technologies. For example, a small study published in JMIR Mental Health found that 84 percent of participants living with a mental illness said they are completely willing or potentially willing to install such an app.


“Providers as well as technological system designers must be aware that although individuals may be comfortable sharing their sensed data with their doctor, they may not be comfortable sharing it more widely, even with people who are already involved in their mental health management such as other health professionals, via the EHR system, or family members,” the authors wrote. “As apps are integrated into clinical care, upfront and ongoing conversations regarding the distribution of sensed data will become increasingly critical, as will provider education about sensed data and the ability for providers and individuals to manage sharing options.”


Focus on Patient Experience

In May, we'll talk to the thought leaders and first-movers reimagining how and where — Hint: outside their perimeter — and report on how they're to activate if not delight the people they treat.


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