On this page we look at some common concerns about the keeping of electronic medical records and the Summary Care Record project that has started in England.
We also answer some frequently asked questions about the keeping of patient records. Please note, there are different processes in Wales, Scotland and Northern Ireland.
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Over the last 10 years or so, most hospitals and GPs in the UK have started to use electronic notes, or health records.
These are gradually replacing the old paper notes and are generally called Electronic Patient Records – or EPRs. These changes are also happening in mental health services.
There are a number of different software systems being used. Some have been commercially-produced, others have been developed by mental health trusts themselves. They all have the same aim – to provide safe, effective electronic records.
Doctors, nurses and other health workers all keep records - also called “notes” or, occasionally, “charts”.
In these, they record your medical and social problems and any care you’ve had. This is so that they, and you, can make good decisions about your health and care.
You may have several. Different healthcare organisations keep separate records.
So, each of us will have a number healthcare records, depending on which services we’ve used.
For example, there could be a record with your GP, one with a mental health service and another with your local A&E department or general hospital.
These records are not electronically linked, except in a limited way via the Summary Care Record (see below).
- Any diagnoses and the details of any health problems you have.
- The treatments you have had.
- How these treatments have helped – or not.
- Any allergies you have – to medications or other substances.
- Any medication you are taking – or have taken in the past.
- Any bad effects you have had from medications.
- The results of any health tests, such as blood pressure tests, blood tests, X-rays.
- How much alcohol you drink.
- If you use any street drugs.
- Personal information - your age, address, work.
- Information from other people - hospital letters, A&E attendances, relatives, carers, insurance companies, solicitors.
Electronic records are more secure than paper records. Paper records are sometimes lost and could be (and, often were) destroyed in floods, fires etc.
Electronic records generally take more time for health professionals to complete, but they can make it much easier to find information.
They are very clearly indexed, so a particular record can usually be found in a few seconds.
Health professionals within an organisation all write in your electronic record. They can see what their colleagues have written even if they do not work in the same unit.
This means that they can keep up to date with your care more easily than if records are held on paper.
Electronic records are always available. A health professional does not need to wait for them to be found and brought to them when are needed. Paper records can be particularly hard to locate at night or at the weekend.
Records are also kept so that healthcare professionals in different organisations can communicate quickly and clearly with each other.
But information held in paper records has to be passed from one place to another using letters, ‘phone calls, faxes and emails.
This causes delays, particularly at night or at weekends. At the moment it is not always easy to transfer an electronic record (or even view it) between different sites or organisations. However, in the future, these records should be linked together.
Electronic systems also create the potential for you to see your records directly, in the same sort of way that you may be looking at your bank account over the Internet now.
The ‘Five Year Forward View’ (see below) suggests this kind of direct access, but how it will be done is not yet worked out.
Some will be transferred directly over to the EPR system.
Some may be scanned in to an electronic storage system and the paper records then securely destroyed. Some paper notes will be stored safely in an archive.
Your information will be stored on “server” computers which should be connected to a backup system on a different site.
So, if there is a problem such as a fire in one location, your information will still be safe.
The same rules apply for electronic records as for paper records. They should be kept for:
20 years from the date of last contact with the service, or for 8 years after a patient has died.
Child and adolescent services
Until the person's 25th / 26th birthday.
Hospitals and GPs don't all use the same EPR system. They may be able to transfer your records electronically from one to another, but that depends on the systems they use.
If electronic transfer is not possible, your records can be printed out and sent as a paper record. You don’t need to take any action.
Even if your whole record can’t be transferred electronically, it may be possible to transfer certain parts of it, such as digital X-rays and scans.
You may be able to keep your own copies of these so you can use them if you need unplanned treatment on holiday. This varies from unit to unit.
We worry about:
Hackers destroying or changing our information.
Computer systems breaking down and losing or destroying information.
Unauthorised staff looking at records when they have no business to be doing so.
Information leaking out.
However, so far, there have been no major losses of NHS data from EPRs.
According to the Data Protection Act 1988, "Appropriate technical and organisational measures shall be taken against unauthorised or unlawful processing of personal data and against accidental loss or destruction of, or damage to, personal data."
This applies to health records, and so do a number of other guidelines about how personal data should be stored by the NHS.
These make it hard for data to be illegally accessed by hacking and unlikely that it will be lost due to a technical failure.
Only the staff in the hospital or trust who are directly involved in looking after you.
- Use a secure password that they change regularly.
- Only see the information they need to do their job.
- Have their details recorded every time they use the system.
- Have regular training in the proper use of information and how to keep it secure.
Your GP can't see your hospital record.
Some other organisations involved in your care, such as social services, may be able to see some of your electronic health records. If that is the case, you should be told that this may happen.
Commercial organisations can't access your EPR information.
EPR systems keep a record of anyone who looks at, changes or enters a piece of information on the system.
So, if someone does look at your records when they should not, it will be recorded and an alert will be issued. Their employer can then take it up as a disciplinary matter.
At the moment, it’s not possible in most places to view any part of your record online. That may be possible soon, though.
You can ask to see your record – even if you are under 16. Just ask your doctor or nurse. They can show you your record if it’s appropriate.
They will be logged in to their computer and will show you your record on the screen. You don’t need to own or be able to operate a computer to see your records in this way.
If, instead of just looking at your records in the presence of a member of staff, you want to officially request a copy of your records, you have to write to the local Data Protection Office.
If you do this, the law (the Data Protection Act 1998) says that you may be charged a fee – a maximum of £50 if you are asking for paper copies of notes.
The NHS, by law, can refuse your request to see some of your information – but only if, to do so, it might be harmful to yourself or another person.
If you also want to see the records about you held by another organisation, you will need to make a separate request to them.
What if I can't understand what is written in my records?
You can go through any notes that aren't clear with one of your care team or a mental health advocate.
Can I change - or comment on - information in my Electronic Patient Record?
If you think that any information is wrong, start by telling your doctor or anyone else who is looking after you. They have a responsibility to keep your information up to date and correct.
If you don't agree with an opinion or an assessment, your disagreement can be written as part of the record.
Can I add information to my Electronic Patient Record?
Yes – you can ask a member of staff to add information to the record for you.
Can I stop information being put into my Electronic Patient Record?
Only if it is inaccurate. Staff have to record accurate information about your treatment. Without it, medical or mental health care cannot be given safely and effectively.
Can I opt-out of having a local Electronic Patient Record?
This is unclear at the moment. Legally you might have the right not to have your information stored in an EPR. But, healthcare staff have a duty to keep records about the care they provide. In many places, there is now no paper record system and the Electronic Patient Record is the only way of keeping information about your care and treatment.
Are the records of different organisations joined up?
Not yet – but this will start to happen soon. That is one of the advantages of electronic record systems. At the moment, your GP can't see your mental health record, and the mental health team can't see your GP record. The Summary Care Record (see below) is a first step towards better information sharing.
How can Electronic Patient Records help healthcare staff to help me?
Any hospital staff who are directly involved with your treatment can share important information quickly. This could be your diagnoses, test results, or your current medication. This can give an accurate picture of your medical history to staff, even if they do not know you very well.
If hospital staff can see your information more quickly, they can give you better care. For example, it is easier to decide safely what medicine to give you if they know:
- What you are already taking.
- Which medication has worked well in the past.
- What dose of medication suits you.
- Any bad reactions to a medicine you’ve had in the past.
You should also not have to repeat your story over and over again to different doctors and nurses.
Can Electronic Patient Records help me to look after myself?
Some systems are now being developed that can let you see your own medical notes – or, at least, parts of them. These can be linked to information about your condition, or the medication you are taking. So, you can be more involved in your treatment.
There are now also phone apps and equipment that you can use at home. You can track your weight, how much you drink, your blood pressure and how much exercise you are taking.
These can all help you to take more control of your health and, in the future, could link directly to your electronic health record.
What are my rights?
- The health service must keep your records safe and confidential. This is covered by the NHS Care Record Guarantee and The Data Protection Act 1998.
- You have a right to see your health records.
- Every trust has a “Caldicott Guardian”. Their job is to protect your confidentiality. You can contact them directly if you have any worries.
Today, separate records are kept in all the places where you receive care.
Health records from these places can usually only be shared by letter, email, fax or phone. At times, this can slow down treatment and make it hard to get information.
The aim of the Summary Care Record (SCR) is to create a copy of important information from your GP health record.
This will be kept in a central, national database which can be used by any healthcare professional in the country. This means that a doctor can easily see your records if you are staying in another part of the country and need medical care.
The Summary Care Record does not contain detailed information about your medical history. It has information you might need for urgent treatment, such as your:
Bad reactions to any medication.
You may want to add other details about your healthcare to the Summary Care Record. Ask your GP if you want to do this.
You can choose - or refuse - to have a Summary Care Record.
If you would like one, you don't need to do anything - it will happen automatically. About 95% of the population of England is currently covered by the project, so you probably have a Summary Care Record already.
A letter was sent to every home some time ago, describing the SCR and how to opt out if you want to. If you did not opt out then, you can still do so now. If you do opt out, you can re-join the SCR scheme at any time.
NHS staff can only see your summary care record if they are directly involved in your care andhave an NHS Smartcard with a chip and passcode (like a bank card and PIN).
They will only see the information they need to do their job. Their details will be recorded whenever they access your data (audit trail).
They have to ask your permission every time they look at your Summary Care Record. If they cannot ask you, for example if you are unconscious, they will still be able to use your Summary care Record, but will have to record in your notes that they have done so.
The Summary Care Record is designed to improve your individual care. It is completely separate from a project called “Care.Data”.
This may, in the future, use health information in various forms of research. Agreeing to have a Summary Care Record does not mean that your information will be used in the Care.Data project.
The ‘Five Year Forward View’ for the NHS was published on 23rd October 2014 by several organisations involved with the development and quality of health and care services.
It suggests that, within five years, you will be able:
- To see your medical and care records online.
- To write information into your records.
- To share your records with your family or carers.
This information was produced by the Royal College of Psychiatrists' Informatics Committee, with special contributions from Laurie Beed and Seb Pringle, members of the RCPsych Carers and Service User Forums, and the Public Engagement Editorial Board.
- Series editor: Dr Philip Timms
- Authors: Dr Mike Robson and Dr Philip Timms
This information reflects the best available evidence at the time of writing.