At the end of January, every household in the UK should have received a leaflet from NHS England entitled, “Better Information Means Better Care”, detailing the changes to the sharing of our medical records, which will no longer be anonymous. No worries though-apparently the changes are for our own well-being, as they will “improve the quality of care and health services for all.” However, if it is truly for research purposes, then the NHS does not require for our records to be public; think tanks and health institutions already have private access to our records for research purposes. In the recent wake of Edward Snowden’s shocking revelations about the NSA’s data mining actions, can the undertones of an invasion of privacy be ignored?
The name of the new programme is care.data, although the leaflet fails to mention this fact. Beginning in March, information from medical consultations, including sensitive information such as mental health, will be continuously uploaded to a central database run by the Health and Social Care Information Centre (HSCIC). Under the Health and Social Care Act of 2012, GP practices are obliged to allow the HSCIC to extract medical information. Information such as your medical diagnoses, blood test results, and referrals to specialists will be extracted.
Every piece of information will be coded, as Hampshire GP Dr. Neil Bhatia details on care-data.info. ‘Green’ data is completely anonymous, information such as percentages. This is the only information that will be published openly. ‘Amber’ data is potentially identifiable, and although the information is anonymous, organisations that have some information about the patient may be able to fill in the missing links and identify the patient. ‘Red’ data is clearly identifiable information about a person, data known as personal confidential data (PCD).
The central database will become one of the most complete databases on health care. Initially, the information will be open to health authorities to better manage NHS resources, but soon after it will be open to third parties such as researchers or private companies.
The NHS has not made information on opting-out very clear, not publicising the programme to the full extent it should be. MedConfidential has provided an opt out form, which can be dropped off at the GP surgery of choice. The website further encourages everyone to pass on the form to their network, as “the choice is yours”. NHS England has failed to publicise this information, and now only through word of mouth or social media attention can people become more aware. However, it is worrying that the programme did not allow for opting out by default, and ask citizens to explicitly state if they wanted their data uploaded. Most people will not bother with the extra step of contacting their GP, provided they even know of the programme and its opt out option, and thus will be opted-in by default.
The importance for research is profound. Potential benefits must be weighed in, such as the proper functioning of the health system, and the development of better healthcare and treatments through research. These are noble goals; however, we have the right to be told clearly how our mined data will be utilised and by whom, and the risks involved. The HSCIC itself stated yesterday there existed a “small risk” that certain patients could be “re-identified”, as insurance companies can match their own data against “pseudonymised” official records. Insurance companies would hit a gold mine accessing this information, and yet the government has done nothing to quell fears. More sinister is the fact that private companies do not need access to our records, as these companies do not conduct research, but rather sell pharmaceuticals. The government isn’t trying to sell our records for advancing healthcare for humanity, but rather has the sinister intention of selling our intimate details for profit, a trend we already see with Facebook and Google. Privacy campaigners have warned patients that they will not know who has access to their information, a terrifying prospect.
We live in a society where invasion of privacy increases everyday, with the state intruding evermore in our lives. Recent events have proven that mighty corporations and military databases can be breached, and therefore the safety of such a large database of personal information is realistic.
With revelations about the NSA’s spying, including the phone hacking of German Chancellor Angela Merkel, citizens are increasingly alarmed about the invasion of their privacy. Reforms to the NSA system have been demanded, yet a new system of privacy invasion, in the auspicious form of “care.data” is coming soon.
While justified anger over the NSA and the call for its reform are increasing, scant attention is paid to care.data. Perhaps in an age of social media, constantly detailing our every move, we have become desensitised to caring about how we share our information. We share it freely, without a single thought paid to it, and with every piece of information you upload, third parties grab hold and utilise it for their own profit. Soon, your sensitive health information can be added to your own personal database the Internet is forming, which third parties will exploit to their maximum profit.
The UK is already a surveillance society, with more CCTV cameras watching its citizens than any other nation in the world. With increasing state intrusion in our private lives, one cannot fail to see aspects of an Orwellian system emerging, bent on state intrusion into the most intimate parts of our lives. Care.data is only an aspect of the larger push towards creating a world run under the watchful eyes of Big Brother.