Making a choice on the data sharing of medical records
Dr Neil Bhatia, GP and Caldicott Guardian for the Oaklands Practice in Yateley, Hampshire, spells out the implications and options for patients over NHS plans to share their medical data
The NHS will shortly be introducing its care.data programme, which will take regular and identifiable data from GPs covering the health records of patients, including details of diagnoses, referrals and medication.
GP practices nationwide will be required to supply this personal and confidential medical information, on a regular and continuous basis, to the Health and Social Care Information Centre (HSCIC).
Under the Health and Social Care Act 2012, GP practices have no choice but to allow the HSCIC to extract this information. The HSCIC states that care.data extractions will start from GP surgeries in March 2014.
The programme will affect every man, woman and child in England and has implications for the privacy of their confidential medical records.
Households will shortly receive a junk mail leaflet through their letterbox about this programme, entitled "Better information means better care". This leaflet is about the care.data programme, although that's not made clear within it, but does not contain an opt-out form.
Many people will not wish to allow their personal information to be processed in their way - and that is their right. The care.data project is entirely voluntary for patients and you do not have to agree to your records being used in the ways described below.
You do though have to act if you wish to preserve your confidentiality. Unless you do, care.data will go ahead and involve your GP records by default.
But you can only act if you are aware of care.data - and very many people do not know about it, will not know about it, or will not understand what care.data is and is not about.
It is easy to opt out of care.data. Just hand in, or post, a form or letter, or email or fax your GP surgery. That's it. Simple. No need to see your GP. The codes will be added, no questions asked. But you need to opt out soon - you have very little time before your records are uploaded.
So what is care.data?
The HSCIC believes that care.data will help find more effective ways of preventing, treating and managing illnesses, guide local decisions about changes that are needed to respond to the needs of local patients and support public health by anticipating risks of particular diseases and conditions.
It also hopes the data will help to take action to prevent problems, improve the public's understanding of the outcomes of care, giving them confidence in health and care services and guide decisions about how to manage NHS resources so that they can best support the treatment and management of illness for the benefit of patients.
What information will be extracted from my medical records?
The patient data extracted will include the following:
- NHS number
- Date of birth
- Gender and ethnicity
- Medical diagnoses (including cancer and mental health) and any complications
- Referrals to specialists
- Family history
- Vaccinations and screening tests
- Blood test results
- Body mass index (height/weight)
- Smoking/alcohol habits
Certain "sensitive" data will not be extracted in the initial upload (the so-called Release 1 of care.data).
- Details of infertility and assisted conception, such as IVF
- Sexually transmitted infections, including HIV, genital herpes, genital warts, chlamydia
- Gender identity matters, including reassignment
- Domestic, emotional, physical and sexual abuse
But it has already been stated that "this list might be reconsidered for a future phase of care.data".
The anonymisation of data
The NHS says that it is going to be anonymised. But this is a myth - it will not.
You cannot object to your NHS information being shared in an anonymised way. That's why there are two opt-outs from care.data - because your data will not be anonymised or de-identified before it is extracted and uploaded from your GP records, and it can and will be released in an identifiable form to organisations.
It is important to consider that sensitive and identifiable information has already been extracted, and will continue to be extracted from your hospital records and uploaded to HSCIC databases. The two sets of your information (GP and hospital) will be combined and subsequently released, in various forms, to organisations within and outside of the NHS, for the purposes of administration, healthcare planning and research.
It is also important to realise that the information is not going to be available to doctors and nurses, and so will not be used to provide direct medical care. Medical staff treating you in GP surgeries, hospitals, A&E, pharmacies and GP out-of-hours centres will not use, or be able to use, this database. care.data is not about information sharing between healthcare professionals. It is about data extraction, linkage and analysis: in other words, data mining.
It is worth remembering that:
- The HSCIC will keep your uploaded information indefinitely - it will never be deleted, but continuously added to
- Your GP surgery cannot stop this extraction - but you, as an individual, can
- care.data is voluntary - you are under no obligation to allow your records to be processed in this way, and you have the right to opt-out of this data mining
- You can prevent the extraction of identifiable data from your GP records by asking your GP surgery to put a special code in your GP records
- You can prevent the release of your identifiable data from the HSCIC by asking your GP surgery to put an additional special code in your GP records
- You cannot prevent the HSCIC from releasing information about you in anonymised, aggregated or pseudonymised formats (to ensure that, you must prevent the HSCIC from obtaining your information in the first place, by opting out now)
- If you opt-out of care.data (now), you can opt back in at any time in the future
If you want to know more about the background to care.data, what will happen to your personal data once it has been collected, and your options as a patient, you can find out more by visiting this website: www.care-data.info