Method

Following discussion with stakeholders as listed above, the review team established a research question as follows: “What are the barriers and enablers for patients and the public participating in sharing personal healthcare data?”

Search terms

The search was conducted using the following terms (listed alphabetically): apps, artificial intelligence, care.data, data/digital access, data/digital anonymisation, data/digital confidentiality, data/digital opt-out, data/digital privacy, data protection, data/digital regulation, data/digital safeguard, data/digital security, data sharing, disinformation, electronic health record, health information, hesitancy, misinformation, wannacry.

Exclusions

Place: Evidence was taken only from UK sources. While some literature is available from non-UK countries, attitudes and opinions from patients and the public within the UK seemed most relevant to GPDPR as a UK government scheme.

Time period: No exclusions, as most of the relevant literature is recent (less than ten years old). The search was conducted up to and including the 2nd July 2021.

Sources: Evidence was not drawn from documents that are held behind journal paywalls, or other literature that would normally be for sale from booksellers. Our evidence was from open access sources (government, patient voice, charity, academic etc). It included “grey literature” from sources such as Healthwatch reports. Conventional academic literature reviews might exclude grey literature on the grounds that it is not peer-reviewed or formally catalogued. However, we see these documents as important sources of insight, grounded in lived experience, and built on trusted dialogue within communities and service user groups.

Relevance: Search results were filtered for relevance, with only documents that explored exclusively, or mainly, public perceptions of use of healthcare data included. For clarity, only information pertaining to public/patient perceptions of healthcare data sharing was extracted for the purposes of this review.

Evidence base

Resource constraints prevented more extensive search across other databases. However, it was also an informed decision as the Patient Experience Library specialises in literature on patient experience and involvement and acts as the UK national evidence base for this kind of literature.

After de-duplication and relevance filtering, our search resulted in 107 documents, broken down as follows:

Age

Source

The 107 documents returned were then read manually, and included/removed based on predetermined inclusion criteria (i.e. explores patient perceptions towards data sharing in a UK context, as previously described).

Relevant comments, findings and quotations from included documents were then extracted, and manually coded against the following themes:

• Choice and control
• Confidentiality/privacy
• Data security
• Influences on public attitudes
• Public understanding
• Regulation

Those were then categorised into the following headings as seen in this report:

• Barriers: Public understanding, public engagement, choice and control, demographic differences
• Enablers: Trust, public benefit, information, relationships