National data opt-out: What is it? Are YOUR NHS details being sold off? Fact checked
NHS Digital outlines how patient data is used
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NHS Digital plans to consolidate the files of patients across the country into a centralised database. This database will be accessible to some companies and researchers approved by the NHS to do so. The move has been criticised on social media by many, for what has been perceived as breaching the confidentiality between doctor and patient.
What is the national data opt-out?
There are plans for the medical records of 55 million patients in England to be downloaded to a database under the control of NHS Digital.
The data will then be available to academic and commercial third parties for research and planning purposes.
The data will include medical information, including records on mental health, sexual health, criminal records and more sensitive information.
GP Ameen Kamlana wrote in the Guardian: “This data grab is unwarranted, unparalleled in its scale and implications and quite possibly unlawful.
“Yet NHS Digital, acting at the government’s request, has downplayed the significance of the move.
“There has been no public awareness campaign, so you’d be forgiven for not knowing that your consent is assumed, or that you have only until June 23 to opt out from having your GP data extracted.
“What this means in practice is that all your GP interactions, starting from the time you were born (and including many of the most intimate details of your life) are at risk of being indirectly sold to corporations.”
What does NHS Digital say?
NHS Digital explain on their website that they only share data to “improve health and care” and that the data “helps the NHS respond to emergencies”, such as the COVID-19 pandemic.
The health service also states there are “lots of protections” in place, to ensure that patient data is only used securely and is anonymised.
With regards to reports that the NHS is selling data off, NHS Digital claim this is not the case.
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The NHS Digital website states: “NHS Digital never sells data and only shares it when it will help health and care and it is safe, ethical and legal to do so.
“We only share the least amount of data required and we do so in the least identifiable way possible.
“The information we share helps researchers and experts to find new treatments and to plan services.
“For example, our data has been used to find the first treatment for people seriously ill with coronavirus and is being used to support research to find a vaccine.
“We do expect organisations who receive data to cover the cost of producing the information they request.
“We publish details of every time we share data so that the public can see exactly how health data is used and why.”
There has also been some concern on social media that people only have a limited time to opt-out from sharing their data for planning and research.
People only reportedly have until June 23 to opt out from having their GP data extracted.
The collection of data from GP practices will begin in July, so if someone does not want their data to be shared with NHS Digital they must register their Type 1 Opt-out with their GP practice by June 23, 2021.
The NHS Digital website explains that people can opt out of the national data sharing initiative at any time and there is no deadline.
People can view or change their national data opt-out choice using the online service at www.nhs.uk/your-nhs-data-matters or by calling 0300 3035678.
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