Patient generated health data: Benefits and challenges.

Patient Generated Health Data (PGHD) is defined as data generated by and from patients.1 The use of PGHD has rapidly increased with the widespread availability of smart phone mobile health applications (mHealth apps) and wearable devices. Currently, the vast majority of PGHD is generated via the use of mHealth apps and wearables like "Fitbit" or medical devices such as a continuous glucose monitoring device. There are many benefits of PGHD including increased monitoring of children's chronic health conditions outside clinical care to supplement ambulatory clinic visits, improved health outcomes, increased patient awareness and engagement and improved patient-provider communication. When leveraged properly, PGHD can be a powerful tool in delivering safe, effective, patient centered, efficient and equitable care as outlined by the Institute of Medicine (IOM).2 The challenges that limit collection, use and acceptance of PGHD include limited access to the internet, inability to incorporate PGHD into clinical workflows, data privacy and security concerns and apprehension about accuracy and safety of mHealth apps. These issues can lead to a lack of use or compliance with devices or apps associated with PGHD. To ensure optimal health benefits, agreement to leverage PGHD should be a joint decision between the clinician and the patient/caregiver. Future steps to ensure safety and clinical relevance of PGHD include involving regulatory authorities, device manufacturers and professional bodies to develop standards for mHealth apps and wearables to promote uncomplicated PGHD integration into workflows, easy and secure sharing of PGHD. Wearable technology, medical devices and smart phone apps become more advanced and widespread among the population, there will be an increasing potential for PGHD to facilitate personalized, efficient, and collaborative care resulting in improved health outcomes for children and adolescent and young adult. More research and innovation is needed to facilitate this transition.

Assessment of Prevalence of Adolescent Patient Portal Account Access by Guardians.

Importance: Patient portals can be configured to allow confidential communication for adolescents' sensitive health care information. Guardian access of adolescent patient portal accounts could compromise adolescents' confidentiality. Objective: To estimate the prevalence of guardian access to adolescent patient portals at 3 academic children's hospitals. Design, Setting, and Participants: A cross-sectional study to estimate the prevalence of guardian access to adolescent patient portal accounts was conducted at 3 academic children's hospitals. Adolescent patients (aged 13-18 years) with access to their patient portal account with at least 1 outbound message from their portal during the study period were included. A rule-based natural language processing algorithm was used to analyze all portal messages from June 1, 2014, to February 28, 2020, and identify any message sent by guardians. The sensitivity and specificity of the algorithm at each institution was estimated through manual review of a stratified subsample of patient accounts. The overall proportion of accounts with guardian access was estimated after correcting for the sensitivity and specificity of the natural language processing algorithm. Exposures: Use of patient portal. Main Outcome and Measures: Percentage of adolescent portal accounts indicating guardian access. Results: A total of 3429 eligible adolescent accounts containing 25 642 messages across 3 institutions were analyzed. A total of 1797 adolescents (52%) were female and mean (SD) age was 15.6 (1.6) years. The percentage of adolescent portal accounts with apparent guardian access ranged from 52% to 57% across the 3 institutions. After correcting for the sensitivity and specificity of the algorithm based on manual review of 200 accounts per institution, an estimated 64% (95% CI, 59%-69%) to 76% (95% CI, 73%-88%) of accounts with outbound messages were accessed by guardians across the 3 institutions. Conclusions and Relevance: In this study, more than half of adolescent accounts with outbound messages were estimated to have been accessed by guardians at least once. These findings have implications for health systems intending to rely on separate adolescent accounts to protect adolescent confidentiality.