Medical records are the document that explains all detail about the patient’s history, clinical findings, diagnostic test results, pre and postoperative care, patient’s progress and medication.

When you visit an NHS or social care service, information about you and the care you receive is recorded and stored in a health and care record.

This is so people caring for you can make the best decisions about your care.

The information in your records can include your:

• name, age and address
• health conditions
• treatments and medicines
• allergies and past reactions to medicines
• tests, scans and X-ray results
• specialist care, such as maternity or mental health
• lifestyle information, such as whether you smoke or drink
• hospital admission and discharge information

Opt out of sharing your health records

Why your data is important

The NHS uses information about patients (patient data) to research, plan and improve:

• the services we offer
• the treatment and care patients receive

We get this data from your GP surgery, hospitals and other healthcare providers. The organisation that collects your data is called NHS Digital.

To help improve services, NHS Digital shares this data with researchers from organisations such as universities or hospitals. This type of data-sharing has been happening for many years.

All data that is collected and shared is protected by strict rules around privacy, confidentiality and security.

Opting out of sharing your data

You can choose whether or not your data is used for research and planning.

There are different types of data-sharing you can opt out of.

1. Stop your GP surgery from sharing your data

2. Stop NHS Digital and other health and care organisations from sharing your data for research and planning

• To do this you need to fill in an opt-out form and return it to your GP surgery. Download a Type 1 Opt-out form.
• Only your GP surgery can process your opt-out form. They will be able to tell you if, and when, you have been opted out.

If you choose a Type 1 Opt-out, your GP will not share your data for research and planning. However, NHS Digital will still be able to collect and share data from other healthcare providers, such as hospitals.

You can opt out, or opt back in again, at any time.

Data used for your care

If you choose to opt out of sharing your data, your personal health information will still be used to make sure you get the treatment and care you need. For example, your data may be shared so that you can be referred to hospital or get a prescription.

Amending inaccurate patient and service user records

20 January 2022

Integrated care Individual rights Personal health records Social care Common law

This guidance provides advice on patients and service users requesting changes to their health and care records. It also covers how staff should amend records.

Guidance for patients and service users

Health and care organisations make every effort to keep your records accurate. However, occasionally information may need to be amended about you or your care.

If you think that the health or care information in your records is factually inaccurate, you have a legal right to ask for your records to be amended. For instance, you can ask for your home address to be changed because you moved house. You may also ask for something you feel has been inaccurately recorded, such as a diagnosis, to be corrected. However, it may not be possible to agree to your request.

A request can be made either by speaking to staff or in writing. You may need to provide evidence of the correct details, for example proof of address or change of surname after marriage. The organisation will then consider the request. Where organisations agree to make a change, they should make it as soon as practically possible, but in any event within one month.

Sometimes, you may disagree with information written in your record, but the information could still be factually correct. For example, you may disagree with a diagnosis you were given in the past. Whilst you can still ask the organisation to amend the entry that you feel is inaccurate, an organisation should not change it if the health and care professional believes it is factually correct. There are exceptions to this, for example, where there is a court order.

In cases where all parties agree that the information is inaccurate, it may still be necessary to retain the information. For example, health and care professionals may have taken the information into consideration when making decisions about treatment or care. This information would therefore be needed to justify and explain health and treatment decisions or to audit the quality of care received. You can, however, request for a comment or entry to be made in the record to show that you disagree with the content and what you think it should say.

If you are unhappy with the decision of a health or care organisation to retain information you wish to have deleted there are some steps you can take. In the first instance, you can make a formal complaint through that organisation’s complaints process. If you are unhappy with the outcome of that process then you might consider making a complaint to the Information Commissioner’s Office (ICO) or consider legal action.