Thousands opt out of health research

Thousands of people in Northumberland have opted out of sharing their medical records for healthcare research, new figures show.

Wednesday, 13th October 2021, 4:06 pm
Updated Thursday, 14th October 2021, 5:20 pm
Medical records opt out figures
Medical records opt out figures

NHS Digital figures show 16,646 people in the area have signed up to the national data opt-out scheme.

Health chiefs say the sharing of patient data is "vital" to research into life-changing illnesses and has been pivotal in developing responses to the coronavirus pandemic.

The scheme allows patients to prevent confidential information held by NHS Digital from being used for purposes other than their own care and treatment.

The data shows 6,635 patients in the area signed up to the scheme between May and September this year alone – 40% of the total.

They were among more than a million people to do so across England over the same period – meaning over three million patients have now set a data opt-out.

The rise in people opting out came after campaigners and groups, including the Royal College of General Practitioners, expressed concern over proposals to introduce a new data collection process – the GP Data for Planning and Research (GDPR) programme.

Prof Martin Marshall, chairman of the Royal College of GPs said the figures were unsurprising given the confusion surrounding GDPR.

He said data sharing for healthcare planning and research has been "vital" during the Covid-19 pandemic, but patients need to be sure they understand how their data will be used.

A spokeswoman for NHS Digital said the NHS took its data safeguarding responsibilities seriously and that data collected would only ever be used by organisations with a legitimate need to access it.