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Sharing anonymised patient-level data where there is a mixed public and private benefit - a new report

Last updated on 1 Sep 2019

Patients aren’t always against their data being used by commercial organisations, according to research conducted by the Health Research Authority and the University of Sheffield.

In a report published today we found that people readily accept NHS access to anonymised patient data for public benefit beyond their own care, for example as part of research, but are less accepting of non-NHS access to this data.

But as Vicky Chico, HRA Data Policy Advisor says, ‘this report shows that people’s attitudes to commercial organisations’ access to anonymous patient health data can change when they’re informed about the ways that commercial organisations might be involved in developing healthcare products and services.’

A series of workshops with patients and members of the public were carried out as part of the research. Before the sessions only 18% of participants felt that it would be acceptable to share anonymised patient data with commercial organisations for reasons other than direct care. After the workshop this figure had risen to 45%.

Juliet Tizzard, Director of Policy, said ‘data driven technologies offer huge potential for the NHS, but in this emerging area it’s crucial for researchers, funders and regulators to understand how patients feel about their data being used in research to develop new treatments and decision-making tools. We shouldn’t make assumptions that patients are either for or against. As our research shows, attitudes are highly dependent not just on who is using the data but for what purpose. This understanding will help NHS organisations identify how best to work with commercial organisations to ensure that the interests of patients continue to be protected and promoted’.

The full report is available here.

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