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The government has recently launched an initiative that will allow companies to purchase to individuals’ private medical data.
The government with gather individual GP and hospital records and create a medical database covering the entire population.
This database, which is called Care.Data, will be controlled by a new NHS department.
This was originally due to begin in March 2014 but was put on hold for six months to allow further consultation to take place. This six month period has now ended and the government is trialing the scheme in four ‘pathfinder’ areas. These are Leeds, Blackburn with Darwen, West Hampshire and Somerset.
Once it is launched, organisations such as university research departments, insurers and drug companies will be able to apply forinformation from the database.
If an application is approved then the organisation will have to pay a fee and will then be able to access the information.
The stated purpose of sharing the data is to aid in medical research and help save lives. It is hoped that it will allow quick and easier responses by the medical community. Examples given include monitoring side effects of particular drugs or investigating the performance of a hospital surgical unit by tracking the impact on their patients.
Should I be concerned?
If any of your information is accessed it would not include any identifiable personal information. It will just include the area you live in, your gender and an age range. This process is known as “pseudonymisation”. There is still a risk that you could be identified from the information and there are concerns that the data might not be completely anonymous.
There is also an exception that would allow certain researchers to apply to lift the “pseudonymisation.” This would only be allowed in extreme situation, for example during an epidemic, but it does mean that your personal information will be stored in the database.There have been several high profile incidents of data being hacked in recent years it is a concern that the entire populations medical data will be store in one place.
What can I do?
If you are worried about your information being included in the database, it is possible to opt out of the scheme. All you have to do is write a letter to your GP or complete a simple form telling your GP that you don’t want to be included in the scheme. Once you have told your GP your data will not be included in the database.