Patient generated health data and electronic health record integration, governance and socio-technical issues: A narrative review
Abdullahi Abubakar Kawu, Lucy Hederman, Julie Doyle, Dympna O’Sullivan
Abstract
Patients' health records have the potential to include patient generated health data (PGHD), which can aid in the provision of personalized care. Access to these data can allow healthcare professionals to receive additional information that will assist in decision-making and the provision of additional support. Given the diverse sources of PGHD, this review aims to provide evidence on PGHD integration with electronic health records (EHR), models and standards for PGHD exchange with EHR, and PGHD-EHR policy design and development. The review also addresses governance and socio-technical considerations in PGHD management. Databases used for the review include PubMed, Scopus, ScienceDirect, IEEE Xplore, SpringerLink and ACM Digital Library. The review reveals the significance, but current deficiency, of provenance, trust and contextual information as part of PGHD integration with EHR. Also, we find that there is limited work on data quality, and on new data sources and associated data elements, within the design of existing standards developed for PGHD integration. New data sources from emerging technologies like mixed reality, virtual reality, interactive voice response system, and social media are rarely considered. The review recommends the need for well-developed designs and policies for PGHD-EHR integration that promote data quality, patient autonomy, privacy, and enhanced trust.