CARE.DATA Important information for you and your family. Please read urgently!



Are you happy for your medical record to be shared or do you wish to opt out NOW?

Please read this important information about your electronic health record and the benefits as well as potential risks of your records being shared with others. You need to read this to decide whether you are happy with what the government has decided or whether you would like to opt out of the scheme. You can always opt in again at any point if needed. At no stage will the care you receive be worsened as a result of opting out. If you opt out, your personal information can still be used for your own care.

You may have come across this leaflet which is being sent to all households in England entitled “Better information means better care”. The government has started a publicity campaign to inform patients just like you about the benefits of providing better information to enable better care for people just like you. You can learn more about this service by clicking here. Here is guidance provided for GPs to explain more.

Read Dr Geraint Lewis’ blog explaining why in his opinion better information means better care given he is the Chief Data Officer of the NHS in England.

This all sounds very good, however there are some very significant concerns that we would like to bring to the attention of our patients. We are responsible for you and you trust us to support your care needs.

We feel patients with access to their records have a greater understanding of their health needs. Also, many of the resources we have provided on as well as in the practice can lead to better care. After all, you know your body, what it can and cannot do. You know how you feel, what you like, what you dislike, what suits you & what does not suit you. You also know what your preferences are and what you want and need. You are in the best position to know what to do if you are supported with information and can see your own health information for yourself. Unfortunately is not about you but rather about the “system” collecting your data and then making it available for those willing to pay for it. Due to a change in legislation in Parliament, the practice is powerless to prevent your record from being collected and copied.

Why does this matter?

There is a basic fundamental right that you have always had which is your right to privacy and confidentiality. We take this right very seriously. When you contact the surgery or come and see one of our clinicians, you see us in the knowledge that the information will stay within the surgery. It will not be made available for others to look at without your expressed consent. (There are some rare situations when your record can be shared with others without your permission. This is for some extreme situations such as if it is in your best interests and you are incapacitated or when it is considered for the public good). This is no longer the case and your data could be routinely taken without needing to get permission from you. We could not therefore guarantee your right to confidentiality. This could go to the very heart of the doctor – patient relationship. We therefore fear a significant lack of trust could result with far-reaching consequences for you and us.

But why should this matter? What are the problems with the way works?

We know that there are sometimes errors in records or vital information that may be missing for a variety of reasons. Perhaps you have had an appendicectomy many years ago or suffer with a penicillin allergy. Often these facts are not possible to be verified without you telling us. But you would only tell us this if you knew it was not in your records. For this reason alone, patients should first get access to their records to ensure the information we have about you is correct and free of any errors. Therefore any decisions we make about your care is more likely to be safe and of the highest quality.
The data from your record will be collected without being made anonymous until later in the process. This means if the data was intercepted, it would be easy to see who it was about and what it referred to. Most experts in IT security do not think this is a sensible way to do things.
It is not at all clear what the data will be used for or even who has access to the data. You should  be asked for the data in your record and have some say on whether it is OK for others to use it and for what purpose. You should be able to see the audit  trail for when your record has been accessed and ideally by whom. That seems like a reasonable request.
What about patients who are less likely to access health services eg those with a disability, those for whom English is poor or those in residential / nursing homes who perhaps are vulnerable and who do not know what the risks are?
It may be that the researchers mentioned in the leaflet may be able to buy your data. Does that matter to you?
Many experts think that even if your name isn’t on the data due to the range of illnesses you may have, you could still be identified because of the amount of personal data that is now available. This has far reaching implications for you and also any offspring you may have. This is no  longer just about you.
Improving care is more than just joining up bits of data or health records. This should be obvious. It’s about having clinicians who care about you and listen carefully. Considering your needs and wants and involving you in shared decision making so that we work together towards a common solution is fundamentally important. It is a very bold statement to make simply that sharing information will lead to better care. Do you really think that is true ?
The Information Commissioners Office has stated that it is the responsibility of every GP practice to ensure every patient knows their rights and has been informed of how they can be exercised, The leaflet doesn’t give you any information on how you can opt out of this scheme. This is the only option you have if you are not happy with the way this scheme is being handled.
GP practices currently are unable to opt all patients out. You will have to do this individually. Our responsibility is to ensure patients are aware of their choices including the ability to opt out.
Care.Data is not about direct patient care. This means that you will continue to receive excellent care whether you choose to remain opted-in or you opt-out of the service. is about the use of your data by other parties that are not delivering care to you directly. It is not clear who these other parties are and why they would be interested in your data.

So what options do you have?

You could choose to do nothing in which case your health record will be copied and sent up to Care.Data.

Or you could choose to opt-out now. You can always opt-in again should you decide it is safe to do so or your concerns have been met.

Dr Neil Bhatia a GP in Hampshire has provided an informative website for patients at his practice which provides a wealth of information with a great deal of detail explaining the consequences.

See how your GP can help you control your personal and confidential information