care.data – your medical records will soon be up for sale!

We are making a small but important digression from our usual themes but the information contained below is of such significance (and of particular interest to alcoholics and to addicts generally) we believe it is worth it.

The government is currently planning to create and implement two data bases: care.data and the Summary Care Record. 

“care.data and the Summary Care Record (SCR) are two entirely separate projects."

care.data in a nutshell:

• “care.data is not anonymous
• Sensitive and identifiable information is going be extracted from your GP records and uploaded to Health and Social Care Information Centre (HSCIC) databases
• Sensitive and identifiable information has already been extracted, and will continue to be extracted from your hospital records and uploaded to HSCIC databases
• You will not be asked for your explicit permission or consent before these extractions take place
• The two sets of your information will be combined into one database and subsequently released, in various formats, to organisations within and outside of the NHS
• You will not be asked for your explicit permission or consent before your uploaded data is released to these organisations
• The information is not going to be available to doctors and nurses, and so will not be used to provide direct medical care
• The HSCIC will keep your uploaded information indefinitely - it will never be deleted, but continuously added to
• Information about you will not be released or sold in just an aggregate (unidentifiable) format
• You cannot control when, to whom, for what purposes, and what specific information uploaded from your GP record the HSCIC releases about you
• You cannot specify that your information is only used for the purpose of medical research”

On the other hand the Summary Care Record (SCR) is “a national centralised database of medical information (allergies and medication, initially) extracted and uploaded from patients' GP records. This project's aims are to make this information potentially available to emergency doctors (in A&E and GP out-of-hours centres countrywide).”

The Summary Care Record does seem to serve some clinical purpose although there are still questions to be answered as to the sufficiency of data security. What safeguards are in place to ensure that this information is not leaked (or sold) to outside interested parties? Currently fraud in the NHS is estimated to cost the taxpayer up to £5 billion (yes £5 BILLION!) a year. The sale of such data might prove to be too lucrative an opportunity to pass up so easily!

The care.data scheme, however, serves no clinical purpose and merely represents a 'data mine' ripe for financial exploitation.

The good news, however, is that you can OPT OUT of both if you choose! Simply go along to your local surgery and ask for the two relevant forms. You will need to opt out of each one separately. Opting out of one does not imply opting out of the other. Both forms should be on display. If they're not, ask why not and don't be fobbed off. Alternatively you can download the two forms from these sites, fill them in and take them along to your surgery.

care.data opt out form: pdf format
                                       .doc format 

Summary Care Record opt out form: pdf format 

By opting out two codes are added to your medical records which indicate you do NOT give permission for the data to be extracted. At a later date you may choose to opt in if you so wish. So if in any doubt opt out and research the information provided in the two sources cited below. 

“How can I be certain that my opt-out has been actioned by my surgery, and the codes added to my record?

If your opt-out form, letter, or fax has clearly stated your wish to opt-out of care.data, the codes that you want added, and your name/DoB, then your surgery will action your request appropriately, otherwise it would be in breach of the Data Protection Act and you would have every right to make a formal complaint.

You do not need to confirm that your opt-out has been registered, but if you are concerned that your surgery may not fully understand the process then the easiest way would be to:

• contact your surgery's practice manager (not your GP).
• request that she/he confirms that the opt-out codes have been added to your GP record - email confirmation would probably be easiest

If all else fails, you are entitled to make a subject access request (SAR) to look at your GP records yourself.

Because:

• your GP records are not exclusively electronic records, and
• the codes should have been added to during the 40 days preceding the SAR

your GP surgery must offer you the opportunity to inspect (i.e. view on a computer screen) your records free of charge, rather than providing you with a permanent copy of the records for a fee. Your GP surgery is also obliged to help you access the information within your record that you are looking for.

Faced with having to organise all of that, most surgeries will quickly confirm that the codes have been added.”

Sources: http://www.care-data.info/

Brief version: http://brief.care-data.info/ 

Remember! Neither democracy nor the NHS are safe in the hands of any government. Both are far too important to be left to the dubious care of our elected representatives. Their security (and integrity) depends always on an ever vigilant citizenry. As always the buck stops with US!

Cheers

The Fellas (Friends of Alcoholics Anonymous)

A pdf version of this entire entry can be downloaded here. Please forward it to your family, friends, work colleagues, and indeed anyone who is interested in maintaining their right to privacy. If we work together we can despatch care.data to the oblivion which it so manifestly deserves! (Note: the pdf contains no references to “The Fellas”, Alcoholics Anonymous etc and therefore your own anonymity will not be compromised).