Have you heard the news? Health secretary Matt Hancock announced that England’s NHS is planning to distribute patient records amongst third parties. This includes identifiable information (such as fertility and sexual health records) of up to 55 million patients. The information will allegedly be available to both academic and commercial third parties.
Don’t want your data to be shared? If you want to opt out, you only have until June 23rd to fill out this form and pass it along to your GP (this is known as a “Type 1” opt out). Opting out, means you will also be able to prevent new medical data from being shared. If you don’t opt out, your records will permanently be included in the new database.
Phil Booth, founder of medConfidential, has added that it would be tricky to trace who exactly the data is being shared with. The NHS has only stated on their website that it will publish a monthly register of who the records have been shared with and whether or not the shared information has been anonymised. According to Hancock, this update has been in progress for three years.
The NHS website explains that the sharing of information is, “needed to run the health service”. Authorities and organisations such as The Care Quality Commission, National Institute for Health and Care Excellence, NHS Improvement, and The Secretary of State for Health and Social Care are listed as being able to request that the NHS “collect information”. Key benefits listed on the NHS website include the use of data to analyse healthcare inequalities, develop cures for serious illnesses such as cancer and to monitor the long-term impact of coronavirus on Britain’s population. Addresses will not be collected. Additionally, the NHS Digital website have emphasised that your choice to opt in or out of the data sharing will not impact your individual care.
Despite this, numerous privacy campaigners maintain that this data collection is “legally problematic”, because explicit public consent has not been given. The Information Commissioner’s Office has not objected to the plans and is currently working on providing a protection impact assessment.
Whether or not you agree with the NHS’s decision, it’s important to be informed, so that you can make the right decision about your privacy and medical data.
More information on both the national data opt-out and your individual medical data records (Type 1) opt-out can be found here: https://digital.nhs.uk/about-nhs-digital/our-work/keeping-patient-data-safe/how-we-look-after-your-health-and-care-information/your-information-choices/opting-out-of-sharing-your-confidential-patient-information