Understanding the Barriers and Facilitators to Sharing Patient-Generated Health Data Using Digital Technology for People Living With Long-Term Health Conditions: A Narrative Review

Abstract

Using digital technology to share patient-generated health data has the potential to improve the self-management of multiple long-term health conditions. Sharing these data can allow patients to receive additional support from healthcare professionals and peer communities, as well as enhance their understanding of their own health. A deeper understanding of the concerns raised by those living with long-term health conditions when considering whether to share health data via digital technology may help to facilitate effective data sharing practices in the future. The aim of this review is to identify whether trust, identity, privacy and security concerns present barriers to the successful sharing of patient-generated data using digital technology by those living with long-term health conditions. We also address the impact of stigma on concerns surrounding sharing health data with others. Searches of CINAHL, PsychInfo and Web of Knowledge were conducted in December 2019 and again in October 2020 producing 2,581 results. An iterative review process resulted in a final dataset of 23 peer-reviewed articles. A thorough analysis of the selected articles found that issues surrounding trust, identity, privacy and security clearly present barriers to the sharing of patient-generated data across multiple sharing contexts. The presence of enacted stigma also acts as a barrier to sharing across multiple settings. We found that the majority of literature focuses on clinical settings with relatively little attention being given to sharing with third parties. Finally, we suggest the need for more solution-based research to overcome the discussed barriers to sharing.

Keywords: data sharing; identity; long-term health conditions; patient-generated health data; privacy; security; technology; trust.