Patient Motivations, Concerns, and Perspectives on Sharing Their Electronic Medical Records (EMRs) Using Digital Health Applications: A Preliminary Study

OBJECTIVES: The 21^st Century Cures Act has empowered patients in the US to own and access their health data and given rise to a number of companion digital tools that collect patient-generated data. However, patients’ ability and desire to generate and manage their health data remains unclear. The purpose of this research is to determine patients’ willingness to share their electronic medical records (EMRs) with digital health applications and ascertain possible motivations and concerns.

METHODS: A questionnaire was developed and distributed via email (following IRB approval) to patients living in the US who were existing users of the Health Storylines (HSL) digital platform. Participants were invited to share their experience and perspectives on interacting with their EMRs.

RESULTS: 40 respondents completed the survey. 65% interacted with the HSL patient portal on a weekly or monthly basis, most frequently to inform their health status. Overall, 98% (39) reported experience interacting with their EMRs, including 18% having experience with EMR integration with digital health technology, Apple Health app being the most used application. While 43% of patients are willing to share their EMRs, 40% of patients were unsure of doing so. Data privacy and security surfaced as patients’ foremost considerations. When presented with the potential benefits, they perceived ease of access to their EMRs via linkage to a health app as the primary advantage.

CONCLUSIONS: Patient willingness to connect their EMRs to self-reported health apps or other data sources is essential to maximize the potential of digital health applications to generate comprehensive health data sources. Although patients are willing to connect their EMRs to an app, patients are apprehensive about sharing their data due to data privacy and security concerns. Education and strict security processes are key to ensuring patients are comfortable and willing to link their EMRs with digital health applications.