Abstract
BackgroundPsychiatry research has begun to leverage data collected from patients’ social media and smartphone use. However, information regarding the feasibility of utilizing such data in an outpatient setting and the acceptability of such data in research and practice is limited.ObjectiveThis study aimed at understanding the outpatients’ willingness to have information from their social media posts and their smartphones used for clinical or research purposes.MethodsIn this survey study, we surveyed patients (N=238) in an outpatient clinic waiting room. Willingness to share social media and passive smartphone data was summarized for the sample as a whole and broken down by sex, age, and race.ResultsMost patients who had a social media account and who were receiving talk therapy treatment (74.4%, 99/133) indicated that they would be willing to share their social media posts with their therapists. The percentage of patients willing to share passive smartphone data with researchers varied from 40.8% (82/201) to 60.7% (122/201) depending on the parameter, with sleep duration being the parameter with the highest percentage of patients willing to share. A total of 30.4% of patients indicated that media stories of social media privacy breaches made them more hesitant about sharing passive smartphone data with researchers. Sex and race were associated with willingness to share smartphone data, with men and whites being the most willing to share.ConclusionsOur results indicate that most patients in a psychiatric outpatient setting would share social media and passive smartphone data and that further research elucidating patterns of willingness to share passive data is needed.
Highlights
Psychiatry research and clinical assessments often rely on patients’ retrospective reports
Given the possibility of investigating and incorporating social media and passive smartphone data in psychiatry, several nuanced questions need to be asked about patient acceptability
Most (201/214, 93.9%) indicated that they had a working smartphone (24/238, 10.1% did not respond to the working smartphone item; 84.4%, 201/238, of the full sample had a working smartphone)
Summary
Background Psychiatry research and clinical assessments often rely on patients’ retrospective reports. Collected smartphone and social media data offer a potential alternative to support such measures. Obtaining information on patients' willingness to provide social media and passive smartphone data for research or clinical purposes would inform potential patient recruitment for studies, as well as eventual clinical use. We present a dual focus on researchers and providers’ use of social media and passive smartphone data. Problems with behavior/symptom self-report have been documented extensively [1]. Social desirability is a major concern; participants may be too embarrassed to fully reveal private thoughts/feelings/symptoms or, alternatively, http://formative.jmir.org/2019/3/e14329/. Psychiatry research has begun to leverage data collected from patients’ social media and smartphone use. Information regarding the feasibility of utilizing such data in an outpatient setting and the acceptability of such data in research and practice is limited
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