Patient Guidance on Preventing the Use of Your Information

Patient guidance on preventing the use of your information

for non-healthcare or social purposes other than direct care

Introduction:

Information about the care you receive assists those involved in providing health and care services to understand the care you need and to identify where any improvements or changes may need to be made.

The NHS has been using information from health records for purposes other than providing your direct care, for example to support training, research and to help plan new health services, known as secondary care. For whatever purpose that information is used, there are strict controls in place governed by Law and the NHS Code of Confidentiality.

Under the ‘Better information means better Health’ / Care.Data initiative data from GPs and other healthcare providers will be added to provide a more comprehensive dataset on people’s health. This data is held by NHS Digital which has overall responsibility for delivering the Secondary Uses Service (SUS) Programme that supports NHS Commissioners and Providers (and their partners) by providing a single source of comprehensive data for the following areas:

• planning
• commissioning
• management
• research
• audit
• public health
• Payment by Results

Some public interest groups, GPs and Healthcare providers, have raised concerns around NHS data loss incidents and the possibility of this data being made available to commercial third parties e.g. insurers and drug research companies. This has led to individuals claiming that the processing of their personal and clinical data for secondary uses by the NHS is causing them unwarranted distress and therefore the legal basis has been established for individuals to opt-out of having their data processed by the NHS for any secondary uses.

Data Protection Act 1998 - the rights of the individual and your information

A key requirement of the Data Protection Act 1998 is that individuals are told how their personal data will be used and who it could possibly be disclosed to. Section 10 of the Data Protection Act 1998 gives any individual the right request that a data controller (in this case the hospital) cease, or not begin, processing their personal data in a way that they feel is likely to cause them unwarranted damage and/or distress – this gives individuals the right to opt-out of processing.

Patients cannot opt-out of having their data used for primary uses (providing direct healthcare), as this would impact the hospital’s ability to treat them safely and effectively. This includes having their data uploaded to the hospital’s clinical systems, which are used for their treatment. In some cases this data is available to third parties; however they are under a contractual duty of confidentiality.

How can I opt-out of my data being used for secondary purposes?

Do I need to do anything if I am happy for my data to be used for secondary use?

No. If you are happy for your data to be shared to help improve health care services then you do not need to do anything. Your information will be used for that purpose and to benefit all patients.

Can I object to my information being shared?

Yes. If you do not wish for your data to be shared you will need to opt-out of data sharing. This will prevent the further processing of any data which may have already been shared for secondary use. The direct care and services you receive will not be affected in any way should you choose to opt-out of the information sharing.

Who do I need to contact to opt-out?

Please contact the Healthcare Records Department for a copy Your Information Opt-out Application.

You will be asked to complete an application and provide forms of identification and the hospital will acknowledge in writing to you within 21 days, if they have either complied in full with your request or the request cannot be complied with because it is unreasonable.

What should I do if I have concerns or require this information transcribed in another format?

Please contact your relevant health and social care partner and ask to speak to their Patient Advisory Liaison service (PALs) or equivalent. They will ensure that you are put in contact with someone who can deal with any questions or concerns you may have.

OPT-OUT Application Form

Please complete this form below if you wish to prevent information about you that is held by the Royal Surrey County Hospital NHS Foundation Trust being used for purposes other than your direct care.

RSCH Healthcare Records Department

Egerton Road

Guildford

GU2 7XX

For further information please visit

Opt-out Application Form

Preventing the use of your information Secondary Uses other than direct care

Section 1: Information held

Please complete this form if you wish to prevent any information held about you by Royal Surrey County Hospital NHS Foundation Trust (RSCH) being used for health and / or social care purposes other than direct care, please tick the appropriate box below

For further guidance, please visit:

or email

Section 2: About You

To establish your identity to ensure that only the records that relate to you are located RSCH requires the following information:

Title:First Name:Surname:

Date of Birth:Sex: (Male/Female):

Home Address (including Post Code):

NHS Number (if known)

Optional, following information may be useful in case of a query.

Telephone contact number:

Proof of Identity:

To help establish your identity, you are required to submit a photocopy of one document for each of the following categories with this application:

1. Confirmation of name¹

• Full driving licence
• Passport
• Birth certificate
• Marriage certificate

(¹ Where you have had a change of name we will require evidence of the name of which you are seeking information e.g. a birth certificate will not be considered as evidence for searches on a married name.)

Plus,

1. Confirmation of address

• Utility bill
• Bank statement
• Benefit book
• Pension book

I declare that the information I am providing to RSCH is correct to the best of my knowledge to identify me on this application.

Confirmation of name:

Confirmation of address:

Section 3: Declaration

The information that I have supplied in this application is correct, and I am the person whom it relates.

Signature:Date:

Once your proof of identification is received and verified and we have confirmed whether we hold any information about you, we will write to you to tell you what is held and confirm the actions we have taken.

Your checklist for completion and submission of Opt-out Application Form:

Is your contact information correct?

Have you enclosed 2 forms of acceptable identification?

Have you signed the form and completed all sections?

Guidance: Patient Opt-out of Secondary Use Information Revised Aug 2017