Londoners are sceptical about how patient data is shared by the NHS, according to a study commissioned by the OneLondon Local Health and Care Record Exemplar (LHCRE).
The independent report, ‘Understanding public expectations of the use of health and care data’, collated existing knowledge about people’s expectations and attitudes to the use of health and care data.
It found a strong public expectation that patient information would be shared among clinicians to support individual care, but a lack of confidence about data being shared for the purpose of research and improving services.
Researchers identified a lack of public understanding about the role of bodies outside the NHS and suspicion about their involvement in secondary uses of data. People were more likely to support data-sharing when they could see a clear public benefit.
Patients also expected that they should know exactly what information will be shared and be able to exercise some control over this. Data viewed as most sensitive include those related to sexual health, mental health and history of substance misuse.
WHY IT MATTERS
The report’s findings will be used to inform OneLondon’s engagement programme and the development of the LHCRE programme nationally.
It has highlighted the need for greater transparency and engagement with the public about how data is used. In particular, a lack of evidence was identified about the views of minority and marginalised groups, who could potentially be distrustful of the health and social care system.
This “points to the importance of reflecting the diversity of the London population in the OneLondon engagement process”, the report states.
THE LARGER TREND
The OneLondon LHCRE is a partnership of NHS organisations and local government across London, working on joining-up data to support safe and effective patient care.
It is one of five LHCREs, along with Yorkshire and Humber, Thames Valley and Surrey, Greater Manchester, and Wessex, which aim to create an information sharing environment in health and social care.
ON THE RECORD
Dr Vin Diwakar, senior responsible officer for OneLondon, said: “The importance of building and maintaining public trust and confidence with regards to data use should not be underestimated. The scope for misunderstanding and cynicism is high, and therefore the need for clarity and transparency is crucial.”
Natalie Banner, lead at Understanding Patient Data said: “It is incumbent upon those managing and using data to describe a clear trajectory from the collection of data to delivery of benefits. Without this, the public will have every reason to question whether the case for using data beyond individual care really stacks up.”
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