Earlier this year, the scheme was promoted by NHS digital. Patient data was to be collected and according to NHS Digital, the data will be used to: inform and develop health and social care policy, plan and commission health and care services, enable research, and provide individual care in exceptional cases.
It has been said the database was not to include names or addresses, or any other data that could directly identify a patient, including NHS numbers, date of birth, or postcode.
NHS Digital claims this will allow the information to remain confidential when it is accessed by third parties in the healthcare industry.
The deadline for citizens to opt out was September.
What type of data was the NHS after?
The NHS was aiming to obtain data relating to a citizen’s sex, ethnicity, sexual orientation, diagnoses, symptoms, observations, test results, medications, allergies, immunisations, referrals, recalls and appointments, including information about physical, mental and sexual health.
Why is the “data grab” been put on hold?
This week, the NHS “data grab” has been put on hold due to millions opting out of the service.
More than a million people opted out of NHS data-sharing in one month. Government figures show that in May, 107,429 people opted out. In June, a further 1,275,153 followed.
What are the experts saying?
Alan Rector a Professor of Medical Informatics in the Department of Computer Science believes NHS data is a major resource for medical research, but the scheme needs safeguards.
Many people have GDPR concerns. Citizens are concerned about how their information will be safeguarded and what will be put into place to prevent a serious attack or accidental breach.
Mr Rector made a point of saying there is minimal detail on the governance of access to the information, and no mention of any independent body responsible either to the public or to the medical professions.
The scheme has now been put on hold with no new date for implementation.
All Response Media viewpoint
The lack of clarity of what will become of our data and the sense of secrecy from the government of implementing this scheme has made citizens sceptical. Many of the people whose data was to be “grabbed” from came across the scheme through social media – some may not have even been aware of the scheme at all.
We believe that complete transparency and raising awareness of its initiatives, from both the government and NHS digital, will allow more citizens to get on board.