Care.data was a programme introduced in 2014, where information on GP records would be shared with the Health and Social Care Information Centre (HSCIC). This has been suspended (July 2016) following a review by Dame Fiona Caldicott, but is maintained (archived) for historical purposes.
The idea was to help the NHS plan and improve patient care for the whole country. GP surgeries by law have to allow this transfer of information (data). However, if you chose not to allow information about you to be shared, you could opt out. If you opted out, your GP could put a code on your records so they couldn't be shared.
What is care.data?
In January 2014, each house in England was sent a leaflet called “Better information means better care” from the NHS - see 'Further reading & references', below. It will have come with junk mail, so you may not have noticed it. This tells you about the new system of information sharing in the NHS, which comes into place in 2014. The name of this programme is “care.data”. On a regular basis, information will be extracted from computer records in GP surgeries. Similar information is already shared from hospitals, and this will be linked. In this way the NHS will have more information about overall care of patients, which will help in planning the system.
In November 2014 the care.data programme announced a 'pathfinder' stage. The purpose of this is to trial, test, evaluate and refine the data collection process. This includes how information is given to patients. The Clinical Commissioning Groups (CCGs) that are taking part in this initial phase are: Leeds North, Leeds West, Leeds South and East, Somerset, West Hampshire and Blackburn and Darwen. A variety of ways of communicating with patients will be tested, including an individually addressed letter sent straight to each individual or household from their GP surgery, a leaflet and other explanatory materials, as well as emails and texts, where the surgery already uses these methods.
What information will be shared?
Your name will not be shared, but the following information will be included, which may allow you to be identified indirectly:
- Your NHS number and date of birth.
- Your postcode.
- Your gender and ethnicity.
- The medical diagnoses on your record, and any referrals.
- Your prescriptions.
- Your family history.
- Your vaccinations and screening tests (smears, etc).
- Your blood test results.
- Your body mass index (BMI).
- Your smoking and alcohol habits.
How will information be shared?
The data will be sent electronically from the GP surgery’s computer system to the Health and Social Care Information Centre (HSCIC). This will happen automatically each month so that it will always be up-to-date.
This will happen across England. It will not affect you if you live in Scotland, Wales or Northern Ireland. If you live in Scotland or Wales, but are looked after by a GP in England, your data will be shared in the same way. You have the same right to opt out.
How will my information be kept secure?
The HSCIC is based in Leeds and was set up in 2013. It was given legal powers to collect health and social care information by the Health and Social Care Act in 2012. Its role is to collect good-quality information about health and social care in England, and make sure it is used to improve patient care.
Once the HSCIC receives the information, it will be linked with any information it has from hospitals about you. The details which could identify you (like NHS number or date of birth) will be taken away. It can be then used in various forms:
- Anonymous or aggregate data. This means a general list of numbers. For example, numbers of patients with diabetes in different areas rather than specific information on those patients. This information may be published.
- Pseudonymised or potentially identifiable data. These are described by NHS England as 'data that do not include identifiers but may be considered identifiable (eg, due to a patient in an area having a rare disease or a rare combination of characteristics). There are strict controls around the limited release of such data. For example, there must be a contract in place, the data are only released to approved organisations, and restricted to specific purposes that will benefit the health and social care system.'
- Identifiable data. This means data which contain information which could identify you. This is only released to specific agencies in exceptional circumstances after approval from an independent advisory group. For example, this might be used in research studies. The HSCIC would need to obtain legal approval for this.
At the time of writing it is not certain exactly what measures will be in place to protect the use of the data. This may change (and this leaflet will too), as more information is released.
What will my information be used for?
This process is not about sharing medical information with doctors treating you. This is to help the NHS plan its services as a whole. For example, the information might be helpful for:
- Comparing services in different places to see where they need to be improved. For example, if more people survive a heart attack in one hospital than another. Or if waiting times for appointments are much longer in one place than in another.
- Identifying disease patterns. This might help researchers find the causes of disease, for example, or help planning which areas need more clinics.
- Comparing how well different treatments work.
- Planning which areas or which illnesses need more input or NHS services.
- Finding ways of preventing diseases.
- Matching local services to local needs.
- Planning the funding of different NHS services.
- Choosing how to make the best use of NHS money.
Who will have access to my information?
The HSCIC can release your information to the NHS and to outside agencies in certain circumstances. There will be strict controls and guidance about who is allowed the information and what it will be used for. At first it will only be given to NHS commissioners. These are the organisations who plan and pay for NHS services.
In the future it may be made available, if approved, to:
- Medical charities. For example, Cancer Research UK, Arthritis Research UK, Diabetes UK.
- Universities and other academic research organisations.
- Medical Royal Colleges. For example, the Royal College of General Practitioners (RCGP), or the Royal College of Surgeons (RCS). These institutions produce standards and guide training for each speciality of doctors.
- Commercial companies. This includes medicine companies (pharmaceutical companies). The information would help them produce, develop, and target new medicines.
- "Think tanks". These are groups of experts on particular subjects who give advice and ideas about specific problems.
- "Information intermediaries". These are organisations which liaise between the suppliers of information and those who want it.
This suggests that almost any organisation could ask for the information, which has caused public concern. However, all data would have anything that would identify you personally taken away, as above (ie anonymous or pseudonymised). Applications for data will only be approved if they are for agreed purposes, such as research or other clear patient benefit.
The HSCIC is funded by our taxes. It cannot make a profit from providing information, although it can make a charge to cover the costs of providing the data.
What is the difference between care.data and the summary care record?
The summary care record is a different kind of information sharing. It began in 2010. This is an electronic summary of your medical record for practical clinical use. This is so that if you are being treated away from home, for example, the doctor treating you would know essential details. This would include your allergies, regular medication and past history. Since this began, you have had the option of opting out of this scheme too. There is a form for this, available from your GP surgery. It is a different one from the care.data opt-out form. One form cannot be used for both. Different codes are put on your records to opt out of each scheme. You can change your mind at any time.
How do I opt out?
If you prefer for your information not to be shared in this way, you can choose to opt out. You do not need to make an appointment with your GP to do this. The best way to do this would be to put in writing to your GP that you wish not to share your information with the HSCIC. You can write a letter or complete a form. There is no specific form to be completed but several are available. Your GP surgery may have a form available on its website, or at reception for you to complete. Or you can download this dissent form. Complete the form and send it to your GP. They will then put a code on your records so that the information cannot flow to the HSCIC.
There are two opting-out options, and two codes for your GP to apply. You may choose one or both. One stops the information going to the HSCIC (Code 9Nu0). The other stops the HSCIC from sharing your information with other agencies (Code 9Nu4). Both options are on the form.
If you are happy for your information to be shared by the care.data scheme, you do not need to do anything. It will happen automatically unless you opt out.
What will happen if I opt out?
Opting out will make no difference whatsoever to your medical care. Hospital doctors or others involved in your care would not have access to this information anyway. It makes no difference to your GP whether you choose to opt out or not. They will not mind either way.
You can change your mind in the future, either to allow your data to be transferred, or to opt out. Your GP can change the code on your records at any time. Just tell the practice or write to them.
What if I'm not sure whether to opt out?
Some reasons why you might wish your data to be shared:
- Better information will help the NHS provide a better service.
- The HSCIC has security measures in place to protect your information.
- There are laws protecting your information.
Some reasons why you might choose to opt out:
- There is a small risk of your data being traced back to you.
- You cannot be sure which companies may have access to your information in the future.
There is a lot of information on the web and in the media about care.data. In the 'Further reading & references' section, below, there are links to more information, and to the differing opinions on this subject. NHS England has a dedicated helpline for this issue. The number is 0300 456 3531.
Dr Mary Harding
Dr Mary Harding
Dr John Cox