Psychiatry Outpatients’ Willingness to Share Social Media Posts and Smartphone Data for Research and Clinical Purposes: Survey Study

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.

Digital Phenotyping and Patient-Generated Health Data for Outcome Measurement in Surgical Care: A Scoping Review

“…Further, we need to understand how patients and professionals think and act in response to active and passive data capture, feedback, and visualization of metrics in relation to an individual’s condition. Interestingly, early work assessing personal digital data in the mental health arena has shown most patients (in outpatient settings) are happy to share social media and passive smartphone data [ 20 , 57 ]. In contrast, authors have also shown populations have been very apprehensive about actively reporting data summaries from their wearables with concerns around data privacy [ 18 , 58 ].…”

“…Further work is needed in surgical settings around the willingness of patients to have their personal passive data shared and utilized for their care [ 57 ]. Studies should also investigate the influence of this exposure on performance metrics and outcomes, as well as the way this data shapes the relationship with clinicians [ 15 , 59 ].…”

Designing a Clinician-Facing Tool for Using Insights From Patients’ Social Media Activity: Iterative Co-Design Approach

“…Padrez et al [ 24 ] found that as many as 70.4% (1008/1432) of patients who reported using social media and were willing to participate in research also agreed to share these data and have them linked to their medical records for health research. Similarly, Rieger et al [ 32 ] reported that in a survey of 238 mental health patients, of those who had a social media account and were receiving therapy, 74.4% (99/133) indicated that they would be willing to share their social media posts with their therapists, if their therapists were concerned about how they were doing, including 53% (50/94) who were willing to share both public and private posts. Specific to psychotic disorders and most relevant to our context, based on semistructured interviews with 112 psychotic disorder patients, in a work by Birnbaum et al [ 33 ], 80.7% (88/109) of patients were open to sharing their social media data with clinical researchers to explore how it can potentially inform their treatment.…”

Naturally occurring language as a source of evidence in suicide prevention

“…This has significant implications in terms of justice, a notable example being the use of algorithmic prediction in the judicial system, where closer scrutiny has led to significant concerns about fairness (Raso et al, 2018, Kleinberg et al, 2016). Conversely, attention to incidents like the widely publicized misuse of personal online data (e.g., the Cambridge Analytica scandal, Isaak, J., & Hanna, 2018), inappropriately conducted social media research studies (e.g., the Facebook “emotional contagion” study, Verma, 2014), and widespread characterization of home devices as “continuously listening” (Lau et al, 2018) can heighten sensitivity about uses of personal data, for example, see Rieger et al (2019). (Also see Krafft et al, 2019, Cave et al, 2018, Bryson, 2019, for broader discussions of artificial intelligence in the public sphere, and Kim et al, 2019 and Seltzer et al, 2019 for recent work on willingness to share personal data.…”