The 23rd June deadline for patients to choose whether they would like to participate in NHS Digital’s plans to collect data from GP surgery records should be pushed back, local London Assembly Member, Unmesh Desai AM, has urged. Mr Desai has said this would give the NHS and the Government an opportunity to increase the scope of their publicity around the data collection scheme so that more Barking & Dagenham residents could be made aware of their right to opt out of it, should they wish. He said that it could “take a lot of people in our borough by complete surprise”.
The NHS have announced plans to publish the medical histories of more than 55 million patients on a new national database to support research and analysis which can be used to improve health and care services.
Privacy campaigners have raised concerns about the proposals which will allow the NHS to share records containing sensitive information with third parties.
But the NHS has responded to say that patient information would not be used for solely commercial purposes and researchers looking to access the database would need prior approval. Records will also be ‘pseudonymised’ – so that a patient’s date of birth, NHS number and postcode will be replaced by a code.
Mr Desai is now backing the calls of the Royal College of GPs for the NHS to ramp up its public messaging about the plans and provide clear advice to how patients as to how they use their right to opt out, if they wish to. He is also urging the Government to step-in and give better public reassurance about how the data will be handled and used with regards to protecting people’s privacy.
There are currently two different ways to opt out, via the NHS website. Patients who choose the ‘national data opt-out’ can prevent NHS Digital from using their data or sharing it. But a ‘Type-1 opt out’ stops NHS Digital from collecting patient information in the first place.
Local London Assembly Member, Unmesh Desai AM, said:
“It’s important that the NHS has the resources it needs to improve its services and prepare for future public health emergencies, and that is the aim of this data collection scheme. But there is no escaping the fact that the communication around this has been short of the mark so far.
“We are talking about the collection of very sensitive information and unless we see the public messaging ramped-up and the deadline for opting out pushed back, this is going to take a lot of people in our borough by complete surprise. We need to make sure that the centuries old understanding around patient-doctor confidentiality is upheld, so the Government has to be totally transparent in what they’re doing here and set out how they are going to protect this data.
“I am particularly concerned about the most vulnerable members of our community, who in the first place won’t necessarily be aware of their right to opt-out, and if they choose to exercise it, they might not have easy access to the internet to do it by the current deadline.
“Arguably, the process for opting out is not as simple as it could be and the NHS needs to explain this process as clearly as possible”.
Notes to editors
- More information about NHS Digital’s plans to collect patient records from GP surgeries can be found here, including information of how patients can opt out;
- Privacy campaigners have raised concerns about the proposals which will allow the NHS to share records containing sensitive information with third parties. The NHS has responded to say that patient information would not be used for solely commercial purposes and researchers looking to access the database would need prior approval. Records will also be ‘pseudonymised’ – so that a patient’s date of birth, NHS number and postcode will be replaced by a code;
- The Royal College of GPs has called upon the NHS to ramp up its public messaging about the plans and provide clear advice to how patients as to how they can opt out;
- Unmesh Desai AM is the London Assembly Member for City & East London.