Patient generated health data and electronic health record integration, governance and socio-technical issues: A narrative review

Authors

Abdullahi Abubakar Kawu, Technological University Dublin, IrelandFollow
Lucy Hederman, Trinity College Dublin, IrelandFollow
Julie Doyle, Dundalk Institute of Technology, IrelandFollow
Dympna O'Sullivan, Technological University DublinFollow

Author ORCID Identifier

https://orcid.org/0000-0003-2531-9539

Document Type

Review

Rights

Available under a Creative Commons Attribution Non-Commercial Share Alike 4.0 International Licence

Disciplines

1.2 COMPUTER AND INFORMATION SCIENCE, 3.3 HEALTH SCIENCES

Publication Details

Informatics in Medicine Unlocked

https://www.sciencedirect.com/science/article/pii/S2352914822002908?via%3Dihub

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.

DOI

https://doi.org/10.1016/j.imu.2022.101153

Recommended Citation

Kawu, A.A., Hederman, L., O'Sullivan, D. and Doyle, J., 2022. Patient generated health data and electronic health record integration, governance and socio-technical issues: A narrative review. Informatics in Medicine Unlocked, p.101153. DOI: 10.1016/j.imu.2022.101153

Funder

Science Foundation Ireland

Creative Commons License

This work is licensed under a Creative Commons Attribution-NonCommercial-Share Alike 4.0 International License.