Care.data is a non-anonymous government programme , which will put all your personal NHS details on the market for companies to buy.
Care.Data is going to begin very soon and will affect every man, woman and child in England and their confidential medical records. Very shortly, every household in England will receive a leaflet through their letter box about this programme. The leaflet is entitled “Better information means better care”.
UPDATE (19.02.2014): NHS England has announced that Care.data – the plan to upload our medical records to a central database – is being postponed for 6 months.
So what is Care.Data?
Care.data is a non-anonymous programme the government plans to put into place. It will retrieve sensitive and identifiable information from ones GP records and upload them on to the Health and Social Care Information Centres’ (HSCIC) database. You will not be asked for your explicit permission or consent for these extractions to take place as they are already happening and will continue to be extracted. Also, the HSCIC charges organisations receiving the information, especially identifiable data. They, from March, will be selling your personal NHS health data.
It is due to start in March 2014.
The only way to have control over this situation is to opt-out as care.data is voluntary (therefore you are under no obligation and you have the right to object)
This happens very easily. You tell your GP and they will put a special code on your records to prevent extraction of data, and an additional code to prevent clearly identifiable data to be used.
Under the Health and Social Care Act 2012, GP practices have no choice but to allow the HSCIC to extract any information.
How does HSCIC think that care.data will be of benefit to the NHS?
The HSCIC believes that it will help find more effective ways of preventing, treating and managing illnesses. Also, it will help guide local decisions about changes that are needed to respond to the needs of local patients. In addition, they think it will improve the public’s understanding of the outcomes of care, giving them confidence in health and care services.
The data extracted – your Primary Care Database – will include:
1. Your NHS number
2. Your Date of Birth
3. Your Postcode
4. Your Gender
5. Your ethnicity
6. The date you registered with your GP surgery
7. Your medical diagnoses and any implications (including cancer and mental health)
8. Your referrals to specialists
9. Your prescriptions
10. Your family history
11. Your vaccinations and screening tests
12. Your blood tests results
13. Your BMI (body mass index)
14. Your smoking/alcohol habits.
So what will happen to the uploaded information?
This extracted data will be combines with, or linked to, data extracted from any information about you held by hospitals, such as A&E attendance, operation or out-patient appointments, and which has already been uploaded to the HSCIC.
From April 2014, the data that the Hospital Episodes Statistics (HES) will be greatly expanded, to include hospital tests and results, investigations performed, medications prescribed as well as nursing observations.
How often will they upload my data?
The GP data will continue to be uploaded, initially on a monthly basis, and added to the HES, effectively updating it. So any new diagnoses, medication prescriptions and results will be automatically uploaded and added to your care.data records at HSCIC.
The NHS isn’t the only company to access and buy data. Companies like:
a. Pharmaceutical companies
b. Health charities
c. Universities and other academic organisation
d. Hospital trusts
e. Medical royal colleges
f. Information intermediaries
h. Commercial companies
i. Insurance companies.
You can easily opt-out of this programme, hence if you feel uncomfortable about it, then don’t hesitate to object as it is a human right to do so.