Electronic Data & Mental Health (EDMH) Research
In 2017, Once Upon a Time Foundation funded the preparation of a comprehensive white paper by Paul Appelbaum, MD, and Carl Fisher, MD, both at Columbia University, which explored issues related to mental health professionals and their access to patients’ electronic communications. This paper discussed how electronic sources of data – including social media – may be extremely valuable in psychiatric evaluations and treatment, and it highlighted the need for more clinical research in this area. As electronic communications have become an increasingly important part of people’s lives, the authors drew attention to an urgent need to consider whether this information could be useful in mental health professional’s practices and what the issues of using this information might be. Along with highlighting some of the possible practical, financial, and/or ethical concerns about the use of electronic collateral information in the diagnosis and treatment of mental illness, the white paper also outlined the potential utility and multiple benefits of such usage. The authors concluded that it would be useful to pursue further analysis of incorporating patients’ social media and/or email/text communications and other collateral electronic data into traditional psychotherapy treatment, and that there is an urgent need for additional clinical research.
The Once Upon a Time Foundation agreed with this conclusion and committed additional funding to conduct some of this much needed clinical research. Specifically, we funded three $1 million clinical research grants at Harvard/McLean, the University of Pennsylvania, and Johns Hopkins University to fund studies to evaluate the impact of incorporating patients’ electronic social media data into traditional psychotherapy treatment.
The Johns Hopkins University Study, “The Use of Electronic Communications-based Automated Technologies to Augment Traditional Mental Health Care” is enrolling patients from the Johns Hopkins Health Systems who have been diagnosed with mood and/or anxiety disorders. This study is focusing on collecting a wide variety of patient data from their activity online through the Bark platform, including but not limited to text messages, email, browser history and social media activity. Patients decide what platforms they would like to share. Patient data is populated into a dashboard for the patient and their clinician to discuss in a clinical setting.
The McLean Hospital (Harvard) Study, “Electronic Media and Its Application in Psychotherapy” is enrolling patients from McLean Hospital and affiliated sites who have been diagnosed with depression and/or anxiety. This study is focusing on collecting text messaging data through the process of patients identifying key words and emotions and searching for identified words in their text messages for use in the clinical setting. Clinicians receive a report summarizing their patient’s text message content in their clinician dashboard to be used as a tool for the clinical session.
The University of Pennsylvania Study, “The Use of Patients Electronic Communication in Psychiatric Evaluation and Treatment” is enrolling patients from the Penn University system and private practices across the US who have been diagnosed with depression and/or anxiety. This study is focusing on collecting patient Facebook and Google Takeout (Google searches and YouTube) data, self-reported texts and social media posts, and phone activity/screen time. Patients and clinicians receive a dashboard displaying their data collected 24 hours prior to each clinical session.
Each study detailed above includes a randomized clinic trial aimed at evaluating the impact of incorporating the collateral electronic data into the patients’ treatment. We hope the studies will help answer multiple questions including:
- Will patients consent to the use of their electronic social media data in treatment?
- Does use of such data in psychotherapy have any adverse impacts?
- Does use of such data improve outcomes and/or other positive benefits?
Our hypothesis is that the studies will demonstrate benefits from such use, and if so, we hope that they will serve as catalysts for both more widespread use of electronic data in psychotherapy and additional research funding in this area. Also, while the three research studies are independent grants with the respective PIs defining study design, target populations, therapy procedures and details, etc., we did require in the grant agreements that the three teams actively collaborate for the duration of the studies. Our belief is that this collaboration can lead to greater efficiencies, shared insights, and greater overall impact for the studies. Finally, if preliminary data obtained in these studies suggest that incorporating access to electronic communications into patients’ mental health diagnosis and treatment is beneficial, the Foundation anticipates providing additional funding for future clinical studies.