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Health Charities

Macmillan Cancer

Macmillan Cancer Support
One in three of us will get cancer and it’s the toughest thing most of us will ever face. If you’ve been diagnosed with cancer, or a loved one has, you’ll want a team of people in your corner supporting you every step of the way. Macmillan provide practical, medical and financial support and push for better cancer care.

Marie Curie Cancer Care

Marie Curie Cancer Care is a UK charity dedicated to the care of people with terminal cancer and other illnesses. Over the financial year 2010/11, we reached a total of 31,799 patients

Youth Health Talk

YouthHealthTalk
Youthhealthtalk enables young people, their family and friends, and professionals such as doctors and teachers to understand young people's experiences of health, illness and life in general. The website feature real-life accounts of issues such as effect on work and education, social life and relationships, consulting health professionals and treatment.

Use of Information

How information about you helps us to provide better care

Privacy Notice to Patients Sept 2019

How we use your personal information leaflet

Introduction

Information about you and the care you receive is shared, in a secure system, by healthcare staff to support your treatment and care.

It is important that we, the NHS, can use this information to plan and improve services for all patients. We would like to link information from all the different places where you receive care, such as your GP, hospital and community service, to help us provide a full picture. This will allow us to compare the care you received in one area against the care you received in another, so we can see what has worked best.

Information such as your postcode and NHS number, but not your name, will be used to link your records in a secure system, so your identity is protected. Information which does not reveal your identity can then be used by others, such as researchers and those planning health services, to make sure we provide the best care possible for everyone.

How your information is used and shared is controlled by law and strict rules are in place to protect your privacy.

We need to make sure that you know this is happening and the choices you have.

Benefits of sharing information

Sharing information can help improve understanding, locally and nationally, of the most important health needs and the quality of the treatment and care provided by local health services. It may also help researchers by supporting studies that identify patterns in diseases, responses to different treatments and potential solutions.

Information will also help to:

  • find more effective ways of preventing, treating and managing illnesses;
  • guide local decisions about changes that are needed to respond to the needs of local patients;
  • support public health by anticipating risks of particular diseases and conditions, and help us to take action to prevent problems;
  • improve the public’s understanding of the outcomes of care, giving them confidence in health and care services; and
  • guide decisions about how to manage NHS resources fairly so that they can best support the treatment and management of illness for the benefit of patients.

What will we do with the information?

We will only use the minimum amount of information we need to help us improve patient care and the services we provide.

We have developed a thorough process that must be followed before any information can be shared. We sometimes release information to approved researchers, if this is allowed under the strict rules in place to protect your privacy. We are very careful with the information and we follow strict rules about how it is stored and used.

We will make sure that the way we use information is in line with the law, national guidance and best practice. Reports that we publish will never identify a particular person.

Do I have a choice?

Yes. You have the right to prevent confidential information about you from being shared or used for any purpose other than providing your care, except in special circumstances. We will ask you before we share information that identifies you outside your GP practice. This will prevent your confidential information being used other than where necessary by law, (for example, if there is a public health emergency).

You will also be able to restrict the use of information held by other places you receive care, such as hospitals and community services. You should let your GP know if you want to restrict the use of this information.

Your choice will not affect the care you receive.

Do I need to do anything?

If you have concerns or decide at any time you are no longer happy for your information to be shared, speak to your GP practice.

Where can I get more information?

Leaflets in other languages and formats are available from our website.

For more information, including a list of frequently asked questions (FAQs), please go to the website at www.nhs.uk/caredata.

You can also get further information from the website at www.hscic.gov.uk.

Or you can speak to staff at your GP practice.

Data Extraction Patient Information Leaflet

A patient has to register their choice to opt out only once, and that registration applies to all healthcare settings and organisations, not just general practice. They can do this by using one of the following:

Online service – Patients registering need to know their NHS number or their postcode as registered at their GP practice

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

NHS App – for use by patients aged 13 and over (95% of surgeries are now connected to the NHS App). The app can be downloaded from the App Store or Google play

 “Print and post” registration form. Photocopies of proof of 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

Getting a healthcare professional to assist patients in prison or other secure settings to register an opt-out choice. For patients detained in such settings Guidance is available on NHS Digital and a Proxy form is available to assist in registration.

How the NHS and care services use your information

Rose Medical Practice is 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 collected about you when you use these services can also be used and provided to other organisations for purposes beyond your individual care, for instance to help with:

 

  • improving the quality and standards of care provided
  • research into the development of new treatments
  • preventing illness and diseases
  •           monitoring safety
  • planning services

 

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.

To find out more or to register your choice to opt out, please visit www.nhs.uk/your-nhs-data-matters.  On this web page you will:

  •      See what is meant by confidential patient information
  •       Find examples of when confidential patient information is used for individual care and examples of when it is used for purposes beyond individual care
  •      Find out more about the benefits of sharing data
  •      Understand more about who uses the data
  •      Find out how your data is protected
  •      Be able to access the system to view, set or change your opt-out setting
  •      Find the contact telephone number if you want to know any more or to set/change your opt-out by phone
  •     See the situations where the opt-out will not apply

 

You can also find out more about how patient information is used at:

https://www.hra.nhs.uk/information-about-patients/ (which covers health and care research); and

https://understandingpatientdata.org.uk/what-you-need-know (which covers how and why patient information is used, the safeguards and how decisions are made)

 

You can change your mind about your choice at any time.

 

Data being used or shared for purposes beyond individual care does not include your data being shared with insurance companies or used for marketing purposes and data would only be used in this way with your specific agreement.

 

Health and care organisations have until 2020 to put systems and processes in place so they can be compliant with the national data opt-out and apply your choice to any confidential patient information they use or share for purposes beyond your individual care. Our organisation is compliant with the national data opt-out policy.

Accessible resources:

British Sign Language video of the patient hand-out

Audio version of the patient hand-out

Braille version of the patient hand-out which can be ordered from NHS England Health Publications

An easy read booklet of the patient hand-out for patients with learning disabilities as well as a larger print version can be downloaded from the resources for patients NHS Digital web page



 
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