Patients ‘have a choice’ on medical information sharing

10:44 03 March 2014

REPRESENTATIVES of patients at the Sid Valley’s GP practice have told residents they have a choice when it comes to the NHS’ intention to share their medical information.

Households should have received leaflets on plans for all care-givers and other ‘approved’ organisations – such as charities, universities and research firms – to be privy to details, writes Stefan Gordon.

The NHS was due to begin information sharing from GP practices in the spring, but it was revealed this week that this has been delayed for six months.

Data about patients and the care they receive is already shared, in a secure system, by healthcare staff to support treatment and care and to plan and improve services for all.

Now the NHS wants to link information from all of the different places where people receive care – including their GP, hospital and community services – to help it provide a more comprehensive picture.

It is hoped this will allow it to compare the standard of care received in different areas and to inform a wide range of research.

Details such as a patient’s postcode and NHS number, but not their name, will be used to link a person’s records in a secure system - so their identity is protected.

Information which does not reveal a person’s identity can then be used by others, such as research organisations and those planning health services, to make sure that the best care possible is provided for everyone.

“Many people are uncomfortable about this level of data sharing,” said Di Fuller, chairman of the Sid Valley Patient Participation Group.

“In the past there’s been a lot of problems with large government-managed data sets and therefore some scepticism about potential security problems. There is also a concern that not enough is understood about how the system will be managed and that you cannot see what data about you is being shared.

“However, there is a huge potential benefit in having access to a national data set that can compare regional trends, measure changes through generations and correlate complex variables around populations’ health.

“Some people fear that the data will be sold in the future to large research companies, but maybe that will be one of the benefits for future research, although the NHS say that this will not happen.

“What is important is that you recognise that you have a choice and how to make it.”

Patients happy for their information to be used in this way do not have to do anything. For anyone who would like more information, the Health and Social Care Information Centre has produced a ‘frequently asked questions’ document. Those with concerns, or who wish to prevent their care data from being shared, are urged to speak to Sid Valley Practice staff or use the opt out form.

Information on all of the above is available at www.sidvalleypractice.nhs.uk and look for the ‘care data’ section.

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