MP: 'Little public awareness' around GP database opt out

South Norwich Labour MP Clive Lewis Photo: UK Parliament

South Norwich Labour MP Clive Lewis Photo: UK Parliament - Credit: UK Parliament

A Norfolk MP has raised concerns patients have little awareness of  how their personal health data will be used as part of a new database of GP records. 

The new system, called General Practice for Planning and Research, will see information about patients' physical, mental and sexual health added to the database from July 1. 

NHS Digital says the data will be used in research including the long term impact of coronavirus, analyze healthcare inequalities and developing cures for serious illnesses.

However a lack of public awareness of how to opt out of the database has prompted the British Medical Association, Royal College of GPs, patients in Norfolk and Norwich South MP Clive Lewis, to speak out. 

Mr Lewis said GPs should urgently contact patients to make them aware of the changes and that they should not feel pressured to hand over the data. 

NHS Digital will not collect identifiable patient data from GP practices if patients have completed a Type 1 Opt-out form before June 23. 

Patients have been reassured they can opt out at any time, but NHS Digital will hold the patient data which was shared with them before the registration of the form.

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Mr Lewis said: "Put the data dump to the NHS on hold until they [GPs] can do it properly. I do not think any reasonable government can have an issue with it.

"I know many GPs around the country are concerned about this change in data usage and have taken action. I want local surgeries to do the same.

"I know that data sharing can have many benefits when done in a transparent, accountable, and responsible way. But these plans go far beyond anything we have seen before. Worse still, they are being rushed through with little public awareness."

NHS Digital said data identifying patients such as addresses, will be replaced with unique codes and assured all requests will be scrutinised and data will not be sold or allowed solely for commercial purposes. 

A list of organisations using the data will also be published.

Patients including David Patey, from Norwich, said the speed of the project and searching for the opt out forms were among his concerns. 

Michael and Margaret Duncum, from Norwich, have opted out saying they felt private and confidential information was being taken away by "stealth". 

A spokesman for Norfolk and Waveney Clinical Commissioning Group, said: “Work continues to take place at practice level to ensure patients are aware they can opt-out of having their data shared, if they wish."

What will the data collect?

  • data on your sex, ethnicity and sexual orientation
  • clinical codes and data about diagnoses, symptoms, observations, test results, medications, allergies, immunisations, referrals and recalls, and appointments, including information about your physical, mental and sexual health
  • data about staff who have treated you

What will it not collect?

  • your name and address (except for your postcode in unique coded form)
  • written notes (free text), such as the details of conversations with doctors and nurses
  • images, letters and documents
  • coded data that is not needed due to its age – for example medication, referral and appointment data that is over 10 years old
  • coded data that GPs are not permitted to share by law – for example certain codes about IVF treatment, and certain information about gender re-assignment