Changes are coming with how GPs handle your sensitive information but privacy campaigners are uncomfortable with the plans. What’s happening and what do you need to do if you’re unhappy with the idea? You can opt out – should you, and how?
Currently, GP data is already shared through the General Practice Extraction Service as well as the Medicines and Healthcare products Regulatory Agency’s Clinical Practice Research Datalink as well as the private-sector Health Improvement Database. NHS Digital have said they will collect and use the information to help improve policy on medicines and health as well as research and that the data will not be shared with insurance companies nor marketing services. The data that is to be collected includes highly sensitive information about your diagnoses, symptoms, all test results, allergies and personal information like your sexual orientation.
They also say they will “pseudonymise” the data, which means that the data should not be able to be linked with individuals.
Despite NHS Digital’s attempts to quell concerns about the plans, activists sent a letter to the Secretary of State for Health, Matt Hancock accusing him of rushing it through and failing to give us the opportunity to understand the plans and the time to opt out.
Foxglove, who describe themselves on their website as “a team of lawyers, technology experts, and communications specialists” say “governments and big tech companies are misusing digital technology”. The independent and not-for-profit organisation have started a crowdfunder to stop what they call “the biggest grab of patient data in NHS history”:
“On 23 June, unless we can force the government to pause this plan, the full GP records of every man, woman, and child in England will be scraped and sent into a central database. Our health information could then be made available to other parties – some of whom may use it for financial gain.
“The government says you can opt out – but most people have never heard of this scheme and will have no chance to opt-out in time. And if you opt out too late, too bad – your health data will be in there forever.”
At the time of writing, they had raised over half their target of £40,000 to take the government to court. Interesting, Tory David Davis MP is one of the co-claimants for the case.
Their main concerns surround the idea of pseudonymisation, as it is quite different to making data truly anonymous. It means your data will have a “disguise”, meaning that it could later be linked back to you. They also say the government has not been clear as to what safeguards exist to stop this data being abused, nor under what circumstances the data can be reunified with the person it belongs to.
NHS Digital’s defence
A spokesperson for NHS Digital defended the plans, pointing to when sharing of data has been useful, historically. They said that key data used in this way had been a success story in many cases; it showed that there was no link between MMR and Autism, has confirmed vaccine safety and helped when investigating correlations between the use of certain medicines and the risk of contracting cancer. They also say they have consulted with “data, privacy and ethics experts” when developing the data collected systems.
How do I opt out?
What’s not very clear in a lot of the information about all this is that there are separate types of data and different ways of opting out of the various data grabs.
There is a National Data Opt-Out but that is separate to the GP data scrape that is new for July 2021. The deadline for preventing GPs sharing data not directly related to your individual care is June 23rd.
However, you can also opt out of sharing information that is held by NHS Digital, which is known as the National Data Opt-Out. Opting out of the National Data Sharing won’t prevent GP Data being collected. Many people will have opted out of this the last time the government tried to do something similar – called care.data in 2013. However, opting out of this is not the same as opting out of GP data sharing.
– Opting out of GP data sharing
The NHS Digital Website allows you to download a form you can send by email or post. Alternatively, you can also call 0300 3035678 to ask for a form to be sent to you. The form, known as a Type 1 opt out form, has been in existence since 2013.
You can still opt out after the deadline, but any information collected before this date will not be deleted, it will just stop data being collected from the date you opt out onwards.
- Opting out of National Data Sharing. There is no deadline for this opt out. Visit this section of the NHS website to do so. You must be over 13 to use this service.
Privacy campaigners aren’t the only ones who have sounded the alarm – Doctors are concerned, too. The British Medical Association (BMA) and the Royal College of GPs (RCGP) have written a joint letter, raising their issues about the plan, which is known as the General Practice Data for Planning and Research programme. They feel that the information given to the public wasn’t widely enough received.
The letter, signed by the Chair of the RCGP (Professor Martin Marshall) and Chair of the BMA general practitioner’s committee (Dr Richard Vautrey) were concerned that the information was only available to those who were “digitally literate”, because only NHS Digital had held the information. The letter also says that putting information in surgery waiting rooms wasn’t enough given patients are not visiting the GP in person as often during the pandemic.
“We would ask that NHSD reconsider your stance on this and take immediate action to run a public information campaign, possibly including the use of national help desks and local champions who GPs can signpost patients to in order to ensure the public is properly informed of this new collection and their options in terms of opting out,”.
Labour have also joined the calls for the programme to be halted, writing to the head of NHS Digital last week.
Many campaigners have also pointed to grave concerns about security. Given that the data isn’t fully anonymised, there are worries that identities could be linked up with data held by other companies and organisations. Some fear that this could be used by businesses to deny you services or prompt direct discrimination. Others have gone further still and suggested that the databases would be targets for cybercrime, blackmail and extortion. Your data is literally up for sale to anyone and the price list is here: https://digital.nhs.uk/services/data-access-request-service-dars/data-access-request-service-dars-charges
Open Democracy have laid out their concerns in a scathing attack on the plan, suggesting that the government is deliberately trying to obfuscate the truth and accuses NHS Digital of deliberately sending you to the wrong place to opt out:
“NHS Digital’s ‘mythbusting’ web-page about data sharing confusingly directs people to a different, weak ‘opt-out’ link that won’t actually prevent your GP records being taken from 1 July.” (refer back to the section on opting out, above).
Open Democracy also takes a look at who is accessing the data and concludes:
“A look at the kind of companies that are already accessing the data, shows them offering services to their customers including market insights for commissioners, strategic market access, even selling back to the NHS… but still NHS Digital says “we don’t approve requests for marketing purposes”.
Maybe it doen’t. Not directly. But it does regularly hand millions of people’s linked hospital histories to companies that serve those who do. And that’s the very same approvals process it will be using for your GP data later this year.”
More detailed information on all the changes and concerns are provided by Med Confidential https://medconfidential.org//how-to-opt-out/
Full Fact also has a really useful explanation for what’s happening if you’re still unsure: https://fullfact.org/health/nhs-data/