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

Simpson, Emma, Brown, Richard, Sillence, Elizabeth, Coventry, Lynne, Lloyd, Karen, Gibbs, Jo, Tariq, Shema and Durrant, Abigail (2021) 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. Frontiers in Public Health. ISSN 2296-2565 (In Press)

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Official URL: https://doi.org/10.3389/fpubh.2021.641424

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.

Item Type: Article
Additional Information: Funding information: This study has been conducted as part of a UK EPSRC funded programme ("INTUIT: Interaction Design for Trusted Sharing of Personal Health Data to Live Well with HIV", 2020; EP/R033900/2), examining TIPS concerns around the sharing of self-generated health and lifestyle data primarily among people living with HIV but also for those with other potentially stigmatised conditions.
Uncontrolled Keywords: data sharing, Patient-generated health data, Technology, long term health conditions, Trust, Identity, Privacy, security
Subjects: B800 Medical Technology
B900 Others in Subjects allied to Medicine
C800 Psychology
Department: Faculties > Health and Life Sciences > Psychology
Depositing User: Elena Carlaw
Date Deposited: 22 Oct 2021 08:03
Last Modified: 22 Nov 2021 03:30
URI: http://nrl.northumbria.ac.uk/id/eprint/47537

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