The introduction of GDPR on 25th May has brought with it a new national data opt-out service which enables people to use an online tool to opt out of their confidential patient information being used beyond their own individual care for research and planning.
The new ‘Manage Your Choice’ online tool that is a part of the national data opt-out service, follows recommendations by the National Data Guardian (NDG) Dame Fiona Caldicott, and is a replacement for the previous 'type 2' opt-out that was introduced on 29th April 2016. That opt-out service meant that NHS Digital would remove certain patient records from data provided where a patient had requested an opt-out.
About The New National Opt-Out Service
The new service applies to those patients in England who are aged 13 or over, and have an NHS number e.g. from previous treatment. Opting out using the new service will not apply to your health data where you have accessed health or care services outside of England, such as in Scotland and Wales.
The opt-out service covers data-sharing by any organisation providing publicly-funded care in England. This includes private and voluntary organisations, and only children's social care services are not covered.
Using The Online Tool
The online tool for opting-out can be accessed at:
To use the online tool, you will (obviously) need access to the Internet, and access to your email or mobile phone to go through the necessary steps.
What Else Is Your Data Used For?
According to the NHS, as well as being used for patient care purposes, confidential patient information is also used to plan and improve health and care services, and to research and develop cures for serious illnesses. The NHS has stressed that, for much of the time, anonymised data is used for research and planning, so your confidential patient information often isn't needed anyway.
The NHS currently collects health and care data from all NHS organisations, trusts and local authorities. Data is also collected from private organisations e.g. private hospitals providing NHS funded care. Research bodies and organisations can also request access to this data. These bodies and organisations include university researchers, hospital researchers, medical royal colleges, and even pharmaceutical companies researching new treatments.
The new service is likely to be welcomed after several past data-sharing controversies dented trust in the handling of personal data by the NHS. For example, NHS Digital were criticised after agreeing to share non-clinical information, such as addresses or dates of birth, with the Home Office, and a report highlighted how the Home Office used patient data for immigration enforcement purposes.
Also, there were serious public concerns and an independent panel finding a "lack of clarity" in a data-sharing agreement after it was announced that Royal Free Hospital in London shared the data of 1.6 million people with Google's DeepMind project without the consent of those data subjects.
What Does This Mean For Your Businesses?
The introduction of GDPR has been an awareness raising, shake-up exercise for many businesses and organisations, and has driven the message home that data privacy and security for clients / service users is an important issue. Where our medical data is concerned, however, we regard this as being particularly private and sensitive, and the fact that it could be either shared with third-parties without our consent, or stolen / accessed due to poor privacy / security systems and practices is a source of genuine worry. For example, many people fear that whether shared or stolen, their medical data could be used by private companies to deny them services or to charge more for services e.g. insurance companies. Data breaches and sharing scandals in recent times mean that many people have lost trust in how many companies and organisations handle their everyday personal data, let alone their medical data.
The introduction of this new service is likely to be welcomed by many in England, and it is likely that the opt-out tool will prove popular. For the NHS, however, if too many people choose to opt-out, this could have some detrimental effect on its research and planning.
GDPR will continue to make many companies and organisations focus on which third-parties they share data with, and how these relationships could affect their own compliance.