The NHS has been criticized for not engaging with the public about their controversial new scheme to digitalise and share our personal data.
The deadline for people to opt out had been pushed back to September the 1st but that has now been scrapped. NHS officials have told ITV News they now want to focus on reaching out to patients and reassuring them their data is safe.
Sharing patient data to private companies affects more than 55 million people in England. An NHS spokesperson said that they don't intend to make any profit from sharing the data and any charge involved is to cover costs.
Our reporter Ravneet Nandra has been investigating what the plans mean for patient care and the potential privacy risks:
Our personal data is valuable. Private companies are spending millions of pounds to get hold of it to find out who we are, what we do, where we go and, ultimately, what they can sell us.
Now the NHS wants a piece of that. They want to share our data from GP practices to private companies - they say - to help research cures for illnesses and plan better NHS services.
However, there are concerns about who will have access to the data and how it will be used.
Professor Jonathan Benger, Chief Medical Officer of NHS Digital says: "This is all about making sure the data is only used for research to improve treatments and healthcare, and planning to make sure we get the right services to the right people at the right time".
Professor Jonathan Benger, Chief Medical Officer of NHS Digital
Under the new scheme, personal data that could be available to third parties includes your physical, mental and sexual health, gender, ethnicity and sexual orientation. It could even include any drug or alcohol history, and any family and work-related problems you may have thought were disclosed in confidence.
NHS Digital is using a process called pseudonymisation which means that patients will not be identified directly in the data. They will be able to use the software to convert the unique codes back to data that could directly identify patients in certain circumstances, and where there is a valid legal reason.
However, NHS Digital are clear they won't be disclosing your name, address, NHS number or date of birth. Basically any information that could directly identify you, and that also includes your GP appointment notes.
Despite that, some campaigners argue that you could still be identified through jigsaw identification. Like Cori Crider, Director of Foxglove who are a non-profit law firm.
Cori Crider, Director of Foxglove
An NHS spokesperson told us they have strong safeguards in place to prevent people being identified from their data.
For others, it's more an issue of patients trusting their doctors. GP Ameen Kamlana helped write an open letter to the government, urging them to rethink the way the plans have been rolled out.
He says: "We want to help people and people want to feel comfortable approaching us with their problems."
Dr Ameen Kamlana, GP
Anyone can opt out of the scheme. Originally the deadline to do that was in June this year, but that was pushed back to September after a criticism of the scheme. Now, even that deadline has been scrapped with no deadline set yet.
There are two ways you can opt out.
Type One opt out means your personal information never leaves the GP surgery. You have to print out a form and send it directly to your doctor.
The National Data opt out however means your data is collected by NHS Digital but it’s not passed on. You can opt out of this online only.
In a letter to all GP’s on 19th July, Minister for Primary Care and Health Promotion, Jo Churchill set out a new process for commencing data collection, moving away from a previously fixed date of 1 September. Data collection will now only begin when the following criteria have been met by NHS Digital:
The ability for patients to opt out or back in to sharing their GP data with NHS Digital, with data being deleted even if it has been uploaded, and outstanding opt outs being processed.
A Trusted Research Environment is available where approved researchers can work securely on de-identified patient data which does not leave the environment, offering further protections and privacy while enabling collaboration amongst trusted researchers to further benefit patients.
A campaign of engagement and communication has increased public awareness of the programme, explaining how data is used and patient choices