Readers will need to act soon if they want to protect access to their healthcare data from potentially being sold onto third parties.
As part of a programme to update the system that captures data from digitised GP records, information about your mental and sexual health, or details of test results or medications you are prescribed could be made available to third parties.
NHS records data dump
NHS Digital say the data collected from GPs is needed to support a wide variety of research and analysis to “help run and improve health and care service”.
Others are concerned with how the data might be used, or access to it sold to third parties.
Your personal medical history
The Government have instructed NHS Digital to gather the following personal information:
- Data about diagnoses, symptoms, observations, test results, medications, allergies, immunisations, referrals, recalls and appointments, including information about physical, mental and sexual health
- Data on sex, ethnicity and sexual orientation
- Data about staff who have treated patients
medConfidential: Your data will be ‘sold’
medConfidential (who is this?) argue that the system is being rushed and that patients are not being informed of what is happening.
They say that copies of your data will still be sold – ie “disseminated” for payment – not accessed exclusively via a safe setting (even though NHS Digital has one).
NHS Digital state they will not be “selling your data”, but rather that they “charge those who want to access its data”. A price list can be found on the Website.
Gov: System needs replacing
The Government programme is formally called ‘General Practice Data for Planning and Research’ and was announced after the Queen’s Speech last month. Until today, the Government planned to push this through by the start of July. after accusations of rushing this has been extended to the 1st September 2021.
The Government argues that the system for gathering patient data is over ten-years-old and needs replacing.
The “new improved system” to collect data from GPs, they say, will:
- Reduce work for GPs so they have more time to focus on patient care
- Explain clearly how data is used to help patients feel confident and informed
- Mean data is collected, stored and accessed in a secure and consistent way
Find out more on the NHS Digital Website.
Your data will be shared
medConfidential explain,
“The plans are to merge each person’s medical and social care records into one single, over-arching record.
“Information about each patient is going to be extracted from GP surgery systems and used in running the administration of the NHS. It will also be given to researchers.
“Data about patients is a valuable commodity that can stimulate the pharmaceuticals market and encourage developments in medicine and IT. “
Data is pseudonymised
NHS Digital say they do not collect patients’ names or exactly where they live – postcodes are collected.
They add that any data that could directly identify someone is pseudonymised before it leaves their GP practice. They would only ever re-identify the data “if there was a lawful reason to do so and it would need to be compliant with data protection law”.
Others are not so confident that all the pseudonymised data will remain anonymised.
How to opt out
The Government have today (8th June) announced an extension for patients to opt out of having their GP data extracted into the new system.
If you don’t want your private healthcare data be shared outside your GP surgery you can opt out, but you should do it as soon as possible (at least a week before 1st September 2021).
Full details of why you might want to opt out and how to can be found on the medConfidential Website.
Who are medConfidential?
medConfidential is an independent, non-partisan organisation working with patients and medics, service users and care professionals, drawing advice from a network of experts in the fields of health informatics, computer security, law/ethics and privacy.
Find out more on the medConfidential Website.
