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Should I opt out of NHS data sharing? Analysis

NHS Digital outlines how patient data is used

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NHS England will begin collecting data on its patients from medical records, about any living patient, including children, and any data about patients who died after the collection began. This is called the General Practice Dara for Planning and Research data collection, and NHS digital says it will be used to improve the head services by allowing it to plan better, prevent the spread of infectious diseases, help with research and monitor the long-term safety and effectiveness of the care it provides. NHS Digital is the NHS provider for data and IT systems within the health service in England.

What will be collected?

NHS Digital will collect information on any diagnoses, symptoms, test results, medications as well as a patient’s information regarding physical, mental and sexual health.

In addition, patients’ gender, ethnicity, sexual orientation and which staff have treated them will all go into the data collection.

This will include the vast majority of historic data from each person’s record, but won’t include people’s names or where they live.

However, that’s not the only information that can serve to identify someone, and other details like NHS numbers, postcodes and dates of birth will enter a pseudonymisation process, meaning codes will be generated to replace these details.

NHS Digital says this means nobody will be able to directly identify you through the data without also having access to the key that links each patient to their code.

However, NHS Digital doesn’t distinguish between pseudonymisation and complete anonymisation, meaning the data won’t be completely anonymous.

The organisation maintains the keys to convert these codes back into data that could identify you, but have said they won’t do that “unless in circumstances of any specific request it is necessary for it to be provided in an identifiable form”.

They say this will only happen in cases where there’s a valid legal reason, for example if you consent to participate in a clinical trial, or where the data is needed by the organisations that provide your care.

Should you opt-out?

There are two ways to opt-out if you’re not happy with your data being shared in the ways described above.

Type 1 opt-out prevents your data being shared outside your GP practice for anything other than individual care for patients, while the national data opt-out stops NHS Digital from sharing any confidential identifiable information (not just GP data) for reasons other than your individual care.

Essentially, this stops your information being shared with other organisations, except in the cases where it’s a legal requirement or there’s a strong public interest argument, for example in pandemic management.

Some have expressed fears their data will be sold on to third parties, but the NHS Digital website assures this isn’t the case.

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The NHS opt out page explicitly states “we are not going to sell your data”, but there is a price list on the organisation’s website listing charges for its Data Access Request Service.

On this page, NHS Digital says: “We do not charge for data but we do apply charges to cover the cost of processing and delivering our service.”

Any organisation that wants to pay to access this data needs to convince the NHS Digital Data Access Request Service that they have a legal basis to do so, ensuring they will use the information safely, securely and appropriately.

Requests are also subject to scrutiny by the Independent Group Advising on the Release of Data.

However, on the other side of the coin, some organisations have sent dire warnings about the scheme, saying it’s illegal with no guarantees that highly personal information won’t end up in the hands of firms that use it commercially.

Cori Crider, director of campaign group Foxglove said: “This is being rammed through in a rush with no clarity for patients or who gets the keys to this giant new data vault.

“If you ask patients whether they want details of their fertility treatment or abortion results or other procedures shared with companies they are not going to be happy.”

Phil Booth, founder of privacy campaigners MedConfidential, said: “They are trying to sneak it out, with only six weeks left before everybody’s records are transferred.”

He added that because the NHS has “opaque” commercial relationships, it would be difficult to trace who can ultimately view the data.

A similar scheme was proposed seven years ago but dropped after a public outcry.

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