2014 update: care.data
Everyone should by now have received a ‘care.data’ leaflet from NHS England. NHS England plans to extract your GP records and link them to the SUS/HES hospital data they hold. Preventing this extraction of data WILL NOT affect your direct care. It will be used for health planning, research, audit and will be sold to private companies. If you have concerns about such uses of your medical information you should opt out of BOTH care.data and the Summary Care Record.
For more information on care data see our sister site medConfidential and Dr Neil Bhatia’s web site Care-Data.info. Both of these web sites have a care.data opt out form. Fill it out and send it to your GP along with Summary Care Record opt out from this site. Details of how to opt out from the Summary Care Record are below.
ADVICE TO PATIENTS
There are at least three things you should be able to opt out from.
First, you can opt out of having your GP data uploaded to a Summary Care Record – or so ministers have promised in the past. To do this, write to your GP using our opt out letter.
Consequences of Opting Out
The Department of Health (DoH) have tried using the argument that by having your details uploaded to the spine, they will be available in an emergency. You may indeed wish to consider this if you have a long-standing medical condition. However A&E Departments do work to established clinical protocols for patients for whom they no medical history, and logging in to a centralised database to reference what they hope are your medical records does not happen at present – and seems unlikely to happen in the near future. If you do have a condition, e.g. diabetes, or penicillin allergy, it would be far better to wear a medical alert bracelet.
Aside from this there should be no impact on your medical care, unless DoH changes the rules to make it so. Your GP will still have access to your records, held locally on the practice’s systems, and can treat you as usual.
Second, you can opt out of having your address and contact details on the Population Demographics Service (PDS) – the NHS ‘address book’. This is prudent if you’re on a witness protection program, or fleeing an abusive relationship. If you don’t, then hundreds of thousands of NHS staff will have access to your real name, address and phone number. If you’re the sort of person who goes ex-directory and ticks the privacy box on the electoral register, then this is for you. [Link coming soon]
Third, you can opt out of the Secondary Uses Service (SUS) which stores records of all hospital treatments in the UK. This includes particularly sensitive stuff like abortions and A&E treatment for drug overdoses. To do this you must invoke section 10 of the Data Protection Act and state that the availability of your hospital records to large numbers of civil servants, etc. causes you distress. [Link coming soon]
Both the second and the third of these opt-outs are likely to be resisted by the Department of Health. We believe however that it is your legal right to opt out, and that when thousands of people do so the Government will have no choice but to accept this.