An NHS scheme called care.data, which will store details of every NHS patient in an anonymous medical database, has left people worried about how their data will be used.
The controversial plan is expected to come to fruition later this year. According to a care.data explainer released by the NHS: "Care.data will enable increased use of information that the NHS already collects with the intention of improving healthcare, by ensuring that timely and accurate data are made available to NHS commissioners, providers, and researchers."
Care.data aims to help researchers to improve their investigations and speed up medical advances by analysing data. However, the scheme has caused controversy as many are cautious about data privacy.
Birmingham MP Roger Godsiff registered a formal complaint over the care.data scheme, insisting that NHS patients have not been fully informed on what their data will be used for. He said: "I don’t believe in all honesty that NHS England can proceed with the upload of confidential patient medical next month when the evidence is growing daily that people don’t know what’s going on. Added to which, it’s not as if people are being asked to sign up for something, the something – your personal medical files – will be taken anyway unless you have opted out".
A privacy impact assessment by the NHS insists that "In accordance with the Data Protection Act 1998, only the minimum necessary patient identifiable data will be collected."
Prahlad Koti, head of government and health at Mastek, believes that the issue is not data privacy, but what the data is used for, if it can make NHS funding go further and if it could make positive changes to patients.
He said: "GP-led Clinical Commissioning Groups are currently responsible for determining where approximately £80 billion of the NHS budget is spent so it is vital that GP data is more effectively utilised. Having access to patient data from primary as well as the current secondary care providers will allow practitioners to make sure that NHS money goes further by identifying services such as dermatology and scans, which are currently being delivered in secondary care but could be provided in the community. It will also empower healthcare providers to much earlier identify specific health needs or outbreaks of certain diseases, and in doing so, improve the patient experience as well as reduce cost."
Although the scheme has the best intentions, to boost research and speed up medical advances, it has certainly ruffled a few feathers and left us wondering why our data, anonymous or not, should be accessed without our consent.