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People with long-term conditions sharing personal health data via digital health technologies: A scoping review to inform design

Lookup NU author(s): Dr Amy Rathbone, Dr Caroline ClaisseORCiD, Professor Abi DurrantORCiD



This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).


The use of digital technology amongst people living with a range of long-term health conditions to support self-management has increased dramatically. More recently, digital health technologies to share and exchange personal health data with others have been investigated. Sharing personal health data with others is not without its risks: sharing data creates threats to the privacy and security of personal data and plays a role in trust, adoption and continued use of digital health technology. Our work aims to inform the design of these digital health technologies by investigating the reported intentions of sharing health data with others, the associated user experiences when using these digital health technologies and the trust, identity, privacy and security (TIPS) considerations for designing digital health technologies that support the trusted sharing of personal health data to support the self-management of long-term health conditions. To address these aims, we conducted a scoping review, analysing over 12,000 papers in the area of digital health technologies. We conducted a reflexive thematic analysis of 17 papers that described digital health technologies that support sharing of personal health data, and extracted design implications that could enhance the future development of trusted, private and secure digital health technologies.

Publication metadata

Author(s): Rathbone A, Simone S, Claisse C, Sillence E, Coventry L, Brown RD, Durrant AC

Publication type: Article

Publication status: Published

Journal: PLOS Digital Health

Year: 2023

Volume: 2

Issue: 5

Online publication date: 24/05/2023

Acceptance date: 27/04/2023

Date deposited: 30/05/2023

ISSN (electronic): 2767-3170

Publisher: Public Library of Science


DOI: 10.1371/journal.pdig.0000264


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