There continues to be much controversy surrounding the creation of a patient data system, with many raising concerns about patient confidentiality.
It is widely accepted that such a scheme would benefit the quality of care within the NHS. It would give experts the information needed to identify unsafe practices, improve the detection of diseases and enable research into medical conditions.
Yet questions have been raised as to who will be allowed access to the data, and for what purposes it may be used.
Tim Kelsey, the NHS chief overseeing the database, has tried to assuage public anxiety, saying “the actual facts are it is unlawful to sell this data for insurance purposes. That message has just got lost.”
Just days after that statement was made, it was revealed the NHS had sold 13 years of hospital data to The Staple Inn Actuarial Society, a major organisation for UK insurers.
The news has seriously undermined public confidence in the care.data scheme, with patients worried that their confidential medical records will be passed on to private companies for commercial gain.
Although those in charge of the database have said the information cannot be sold to insurance companies, the reality is that the data may be shared with organisations outside of the NHS. For example:
- Green data (or aggregated or anonymous data) details average values for large groups of anonymous patients. This will be published free of charge and available for all to see. It is possible that analysts will be able to work out the names of individual patients with rare conditions.
- Amber data (or pseudonymised data) removes a patient’s postcode, date of birth and NHS number. This should not be published, but it is possible that it will be made available to universities and private companies under a legal contract, as is currently the case with hospital data. It is also possible that analysts will be able to work out the names of individual patients by cross-referencing amber data with other data sets.
- Red data (or personal confidential data) does identify a patient. This can be made available in exceptional circumstances such as an epidemic. The information can also be passed on to an organisation that has obtained consent from the patient, the Secretary of State of Health, or the Heath Research Authority.
Therefore there is a risk that you will be identified, and unless you actively ‘opt out’ of the scheme, you have no control over where the information might end up. Trust must be put into the NHS to make the right decisions, and this is something many are struggling to accept.
Breach of duty
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