Leading dementia research charity backs response to patient data report

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By Philip Tubby | Wednesday 12 July 2017

Recommendations for an ‘opt-out’ system for sharing patient data to improve care and research, coupled with new security standards, have been accepted by the Government – and Alzheimer’s Research UK has welcomed the response.

Last year, the National Data Guardian for Health and Care, Dame Fiona Caldicott, reviewed how patient data should be used, with a focus on data security and consent.

In the report, Dame Caldicott proposed an opt-out model, where patients can choose not to have their data shared. It also recommended the implementation of new data security standards, to ensure that when a person’s data is used to improve care and research, it is done so correctly and anyone who mishandles it is held to account.

Alzheimer’s Research UK welcomes the Government’s response to the review, where it agrees with the recommendations and promises to work with key organisations to ensure the country ‘realises the potential of information and technology’. For dementia research, patient data can be beneficial in helping to identify risk factors for the condition and highlighting how people with dementia respond to different treatments.

Dr Matthew Norton, Director of Policy at Alzheimer’s Research UK, the UK’s leading dementia research charity, said:

“We welcome and support the Government’s encouraging response to the recommendations made in the Caldicott report. When used appropriately, patient data can offer a wealth of information for researchers investigating how diseases develop and how they could be treated and prevented. Shared information is a vital resource in helping us to achieve our vision of creating a world free from the fear, harm and heartbreak of dementia, as well as improving research and healthcare for many other conditions.

“We must emphasise the importance of this data being used with people’s proper, informed consent and patients being given the choice to opt-out. The use of patient data must be paired with stringent policy so people can trust that their personal information is being used in the right way. We know that public knowledge of this issue is low, so it is vital that the next steps are properly communicated to increase understanding and encourage people to become involved in data sharing initiatives that could benefit thousands of lives.”

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Philip Tubby