The National Data Guardian (NDG) for Health and Care has highlighted the need for transparency in using individuals’ data in the sector.
It has published the findings of its dialogue with more than 100 members of the public as part of the Putting Good into Practice project, which it is co-funding with UK Research and Innovation.
The NDG said that key findings of the report include that transparency cannot be separated from public benefit, and that is has be there throughout the data lifecycle – including collection, storage, assessment and use of data.
In addition, the public benefit is undermined if public engagement with a cross-section of society is not integrated into decisions about the use of data.
The report also highlights areas that mattered most to the participants, including that: identifiable and sensitive data should be treated with the utmost care; public authorities should be ambitious in the use of health and care data for innovation; the benefits must be fairly distributed; safeguards are needed against data manipulation; and the public benefit must outweigh profit.
“The guidance will encourage greater consistency for decisions about whether health and care data should be used for research, planning and innovation,” the NDG said.
A further dialogue is scheduled to take place this summer. It is organised by deliberative engagement specialists Hopkins Van Mil.
Image from iStock, Natalie Mis