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Public Perceptions on Data Sharing: Comparing Attitudes in the US and UK

15 Pages Posted: 2 Jun 2020

See all articles by Saira Ghafur

Saira Ghafur

Imperial College London

Jackie Van Dael

Independent

Melanie Leis

Independent

Ara Darzi

Imperial College Healthcare NHS Trust

Aziz Sheikh

University of Edinburgh - Asthma UK Centre for Applied Research

More...

Abstract

Summary: The past decade has seen a significant rise in ‘big data’ and artificial intelligence (AI) applications aiming to improve the quality, safety and efficiency of care. Yet, recent data breach and cybersecurity scandals have raised public awareness of data security and privacy risks. This study aimed to examine public perceptions towards data sharing, data access and the use of AI.

Methods: A YouGov survey was conducted with nationally representative samples of citizens across the United Kingdom (UK; n=2,080) and United States (US; n=1,114). The survey queried respondents’ access to and perceived usefulness of Personal Health Records (PHR), willingness to share anonymous Personal Health Information (PHI), and attitudes towards the use of AI in healthcare.

Findings: Respondents reported limited use of PHR in both countries. PHR access was particularly low in the UK (14.3%, 95% CI [12.8, 15.8]) compared to the US (44.5%, 95% CI [41.6, 47.4]). Apprehension towards sharing of PHI was higher in the US (23.4%, 95%CI [20.9, 25.9]), a largely privatised system, than in the UK (14.9%, 95%CI [13.4, 16.4]), a socialised, single-payer system, and results indicated concern amongst the public that data might not be protected from commercial end-use. Most respondents in both countries (58.2%, 95% CI [56.1, 60.3] in the UK; 51.8%, 95% CI [48.9, 54.7] in the US) were not happy to receive healthcare from AI applications, especially if without doctor or nurse support.

Interpretation: Our findings indicate growing public concern around data sharing and the use of AI in healthcare. Without sufficient investment in public trust, data security and informed consent, patients may be deprived of access to novel digital solutions that could benefit their health.

Funding Statement: This work was supported by the World Innovation Summit for Health (WISH) which is hosted by the Qatar Foundation.

Declaration of Interests: The authors declare no conflicts of interest associated with this research.

Ethics Approval Statement: The authors stated that ethics approval was not required for this study as all data was anonymous and in the public domain.

Keywords: Data; health technologies; privacy; public perceptions

Suggested Citation

Ghafur, Saira and Van Dael, Jackie and Leis, Melanie and Darzi, Ara and Sheikh, Aziz, Public Perceptions on Data Sharing: Comparing Attitudes in the US and UK (4/23/2020). Available at SSRN: https://ssrn.com/abstract=3586711 or http://dx.doi.org/10.2139/ssrn.3586711

Saira Ghafur (Contact Author)

Imperial College London ( email )

South Kensington Campus
Exhibition Road
London, Greater London SW7 2AZ
United Kingdom

Jackie Van Dael

Independent

Melanie Leis

Independent

Ara Darzi

Imperial College Healthcare NHS Trust

Praed St
London
United Kingdom

Aziz Sheikh

University of Edinburgh - Asthma UK Centre for Applied Research ( email )

Edinburgh
United Kingdom

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