My Data Choices: Pilot evaluation of patient-controlled medical record sharing technology

Abstract

Patients desire greater control over sharing their digital health data. Consent2Share (C2S) is an open-source consent tool offered by SAMHSA and the VA to support granular data sharing (GDS) options that align with patient preferences and data privacy regulations. The need to validate this tool exists. We pilot tested C2S with 199 English and Spanish-speaking patients with behavioral health conditions (BHCs) and patient guardians. Data were analyzed using mixed methodology. All participants desired granular control over the sharing of their health data. Most participants (87%) were highly interested in using a tool that offered granular options for executing data sharing decisions, with over half (55%) indicated that being able to specify the data type, data recipient, and data use purpose made them more willing to share their medical records. Majority (83%) indicated that the supported data type sharing categories satisfied their data-sharing privacy preferences. Majority (87%) also reported that knowing the purpose of data use made them more comfortable in sharing. Some participants (28%) accessed the education materials provided on data type sharing options. Patients want granular choices when sharing medical records. C2S and its supported data type sharing categories are adequate to capture patients’ data sharing preferences. Further development is needed before deployment in clinical environments.