There has been a lot in the news regarding the NHS, data sharing and opting out.

 

We would like to explain how we use your information and what is changing with how NHS digital may use your data.

 

As a GP Practice we are one of many organisations working in the health and care system to improve care for patients and the public.

Whenever you use a health or care service, such as attending Accident & Emergency or using Community Care services, important information about you is collected in a patient record for that service. Collecting this information helps to ensure you get the best possible care and treatment.

The information recorded includes the following:

• Demographics, e.g. address, telephone number, e-mail, date of birth, gender, etc.

• What you tell us when you see us in consultations e.g. about your physical and psychological health and social circumstances

• Diagnoses, investigations, treatments, referrals, family background

• Social information e.g. housing status, alcohol, smoking data

• Third party sources e.g. hospital letters, A&E attendances, LIVI, relatives, carers, insurance companies, solicitors.

 

We share different types of information about our patients. These include:

• Personal information about you and your illness, when needed for your direct care, e.g. referral to hospital consultants, district nurses, health visitors, midwives, counsellors, the summary care record

• Patient identifiable information to public health, in order to arrange programs for childhood immunisations, communicable diseases, cervical smears and retinal screening

• With explicit consent, personal information to other organisations outside the NHS, e.g. insurance companies, benefits agencies.

• Limited information about you, if relevant, to protect you and others, e.g. to social services child protection investigations

• under certain acts of parliament to protect you and others e.g. court order

• Summary information which is anonymised (cannot identify you) e.g. quality and outcome frameworks (QoF), medical research and clinical a

This may only take place when there is a clear legal basis to use this information. All these uses help to provide better health and care for you, your family and future generations. Confidential patient information about your health and care is only used like this where allowed by law.

Most of the time, anonymised data is used for research and planning so that you cannot be identified in which case your confidential patient information isn’t needed.

You have a choice about whether you want your confidential patient information to be used in this way. If you are happy with this use of information you do not need to do anything. If you do choose to opt out your confidential patient information will still be used to support your individual care.

 

National Opt-Out Facility

You can choose whether your confidential patient information is used for research and planning.

To find out more visit https://www.nhs.uk/your-nhs-data-matters/.

Who can use your confidential patient information for research and planning?

It is used by:

·         The NHS

·         Local authorities

·         University and hospital researchers

·         Medical colleges

·         Pharmaceutical companies researching new treatments

 

Making your data opt-out choice

You can choose to opt-out of sharing your confidential patient information for research and planning. There may still be times when your confidential patient information is used: for example, during an epidemic where there might be a risk to you or to other people’s health. You can also still consent to take part in a specific research project.

 

Will choosing this opt-out affect your care and treatment?

No, your confidential patient information will still be used for your individual care. Choosing to opt out will not affect your care and treatment. You will still be invited for screening services, such as screenings for bowel cancer

If you opted out at the practice previously.

You will be automatically be opted out of the National and NHS digital data.

What should you do next?

You do not need to do anything if you are happy about how your confidential patient information is used.

 

If you do not want your confidential patient information to be used for research and planning, you can choose to opt-out securely online or through a telephone service. 

 

You can change your choice at any time.

Using your health data for planning and research

You can decide whether you wish to have your information extracted and there are two main options available to you.

Option 1:

Type 1 opt-out applies at organisational level and means that your medical record is not extracted from the organisation for any purpose other than for direct patient care. You can opt-out at any time. Opting out will mean that no further extractions will be taken from your medical record.

For a Type 1 Opt-out, you need to contact the organisation by phone, email or post to let us know that you wish to opt-out. Further information is available here.

Option 2:

The National Data Opt-out (NDO-O) allows data to be extracted by NHS England for its lawful purposes but it cannot share this information with anyone else for research and planning purposes. You can opt-out at any time.

NDO-O – you need to inform NHS England. Unfortunately, this cannot be done by this organisation for you. You can opt in or out at any time and complete this by any of the following methods: 

●        Online service – You will need to know your NHS number or your postcode as registered at this organisation via Make your choice about sharing data from your health records

 

●        Telephone service 0300 303 5678 which is open between 0900 – 1700 Monday to Friday

 

●        NHS App – For use by patients aged 13 and over. The app can be downloaded from the App Store or Google Play

 

●        “Print and post” Manage your choice 

 

Photocopies of proof of the applicant’s name (e.g., passport, UK driving licence etc.) and address (e.g., utility bill, payslip etc.) need to be sent with the application.

 

It can take up to 14 days to process the form once it arrives at NHS, PO Box 884, Leeds. LS1 9TZ

 

Further information on NDO-O is available here.