Your health records

Every person who uses our services has their medical information stored in a file called a patient record. We operate a number of mental health services in south west London, with the majority of services being provided at three hospital sites: Springfield Hospital, Tolworth Hospital and Richmond Royal Hospital.

Your patient record is stored securely on our computers and is used by clinical staff at the Trust providing treatment to you to help make decisions about treatment and services for you. This system is similar across other services providing healthcare in the UK, such as GPs and other mental health hospitals not covered by SWLSTG.

As well as being valuable in helping with your personal clinical care, the information stored in patient records can be used to help us understand more about the causes and treatments of different health problems and how the healthcare systems we provide are operating in the real world.

We have a computer system which helps us to carry out research and audit using patient records. The computer system is called CRIS: Clinical Record Interactive Search. CRIS anonymises all the data in a patient record so that no-one is identifiable when researchers use CRIS. Personal information like your name, your date of birth, your address and your carer’s name are ‘blanked out’ by the system and are never seen by researchers in the Trust without your permission.

What sort of things can CRIS help with?

CRIS helps us look at large amounts of information stored in patient records more easily. Here are some examples of the questions that could be looked at:

• Do people’s home living arrangements affect how long people spend in hospital?
• Does having a mental health problem affect your lifespan and likelihood of having different physical health problems?
• Do some drugs work better than others to help with the symptoms of Alzheimer’s disease?
• Do some drugs for schizophrenia affect physical health, e.g. by causing diabetes?

Researchers using CRIS may also link information about your treatment and care in the Trust with other aspects of your health. This will help to improve physical and mental health as a whole. For example, at a neighbouring mental health Trust information about patients who had both mental health problems and cancer was linked to look at the impact of mental illness on cancer survival rates. CRIS enables us to do this in a format that will not identify you.

How are my personal details protected?

CRIS removes or covers up any information that can identify you. Your name, the name of your carer, your full date of birth, address, postcode and phone numbers are replaced with ‘ZZZZZ’. This is achieved by special software that can also take account of spelling mistakes and other human errors. It is not 100% perfect, however if a researcher comes across an example where the software has failed to anonymise the record successfully, they must flag the record to be hidden from view until the problem is corrected.

CRIS is only available to researchers who have a contract with the Trust. Every user and every project has to be approved by an oversight committee that includes service user and carer representatives, senior doctors and the Trust’s information and data protection representatives. The committee meets regularly, monitors the use of the CRIS system to make sure it is being used as intended and can remove and refuse approval at any time. CRIS has received ethical approval from a national, independent (non-Trust) committee called the Health Research Authority, as a safe, secure and confidential information source for audit and research.

Can I request to have my record removed from CRIS?

Yes. Please contact the Research & Development department at research@swlstg.nhs.uk

How do I find out more?

The Trust will be holding open sessions for people who would like to find out more and further information about CRIS and how health research can improve services is available at the following links: The national CRIS website can be found here.

The Kingston Care Record is a confidential electronic record of your health and social care information if you live in Kingston or have a Kingston GP. It is stored on a secure computer system. This means that your doctor, nurse or social worker will be able to offer you the best possible care and support quickly and safely. Having your health and social care information in one safe place will benefit you in several ways:

• You will receive the best possible care, support and treatment more quickly.
• You won’t be asked the same questions over and over again or have to keep repeating your medical or social care history.
• Doctors, nurses and social workers will be able to work better together and make the best decisions with you through access to the right information when they need it.
• You won’t need to have unnecessary appointments or tests.
• It will reduce the chances of errors being made and so will be safer for you.

The Kingston Care Record is confidential and secure. Only doctors, nurses and social workers involved in your care and support will be able to see your record when you say they can, or in an emergency. If you don’t want your record to be seen at any time, all you have to do is say so. The choice is yours. Find out more about the Kingston Care Record

This National Data Opt-Out Programme has been introduced to allow NHS patients the opportunity to opt out from the use of their personal data for anything other than their individual care and treatment, such as research or planning purposes. This applies to the whole of the health and adult social care system in England. As from March 2020 all health and adult social care organisations are required to be compliant with the policy, where they are using confidential patient information for purposes beyond an individual’s care and treatment.

The opt-out applies only to a limited amount of patient information held by NHS organisations.

What the opt-out does affect

Research and planning are the only usage that apply, and only then if information that identifies a patient is being used. If the information is anonymised before it is used, the opt-out does not apply. You cannot opt out of having your personal information anonymised for research or planning (or any other secondary purpose that might apply).

If we do want to use identifiable data for research or planning purposes, we must have the person’s explicit consent. This has always been a requirement under data protection legislation and the Trust already complies with this requirement. If a person does not give consent, we do not use their data. So in real terms, very little will change.

What the opt-out does not affect?

The opt-out does not apply to information shared / used for any of the following:

• Direct care of individuals between health and social care professionals
• Where explicit consent has been given for information to be used
• Safeguarding – where children or adults may be at risk
• Vital interests - to prevent serious harm to someone (e.g. life or death situations)
• In the public interest – where the public interest is greater than the need to maintain confidentiality (e.g. public health risks)
• When a law requires (e.g. NHS reporting, detection of serious crime)
• Anonymised data – where the information is edited to remove any possible way of identifying an individual

How to opt out?

If you wish to opt out, you can only do so by using the online service - https://your-data-matters.service.nhs.uk - or phoning 0300 3035678.

You cannot opt out via our Trust, your GP surgery or any other NHS Trust directly. Please only contact the opt-out service using the above details.