Reviewed June 2021
Isabel Hospice Privacy Notice for clinical service users
What information do we collect about you?
To ensure that we can provide the most effective care, we record important information about you that may include your medical history, the types of medication you take, any allergies you have and demographic information like your home address and next of kin.
How do we store and use the information we collect about you?
Your information is collected stored and protected in accordance with the Data Protection Act 1988 and EU General Data Protection Regulation.
We store your information on a clinical computer system which is used by doctors, nurses and their teams. It is designed to allow for safe and secure information sharing between health and social care organisations for use in direct patient care. This is so that health and social care professionals can ensure a coordinated care response. We are part of the Hertfordshire and West Essex local record sharing programme My Care Record. Further information can be found at the following link: http://www.mycarerecord.org.uk/
As the service user, you have complete control over whether your carers at one organisation can see details of the care you have received at other organisations. At the first contact, you will be asked to consent to the sharing of your information with other healthcare organisations. You may dissent to information being shared and even if you give permission on one occasion, you can change this at any time.
If there is a complaint about the care you have received whilst in our care, we may use the records to confirm the care provided.
The information collected about you when you use our service 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 audit, 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.
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.
Information sharing in Multidisciplinary Teams (MDTs)
A multidisciplinary team (MDT) is a group of health and care staff who are members of different organisations and professions (e.g. GPs, social workers, nurses), that work together to make decisions regarding the treatment of individual patients and service users.
MDTs are used in both health and care settings.
Your care may at times be provided by several health and care professionals from one or more organisations through an MDT in which they will come together to discuss how best to care for you.
Information will need to be shared between them so that they have the information they need to provide you with the best care.
There is a legal duty on organisations to share your information for your individual care where it is lawful to do so, unless you object.
All organisations involved in the MDT have a duty to ensure your information is used and shared safely.
If you are unsure what information is being shared about you, or someone you are responsible for, you can ask health and care organisations to explain this.
How long do we retain your information?
Personal data shall not be kept for longer than is necessary and we will:
• review the length of time we keep personal data;
• consider the purpose or purposes we hold information for in deciding whether (and for how long) to retain it;
• securely delete information that is no longer needed for this purpose or these purposes; and
• update, archive or securely delete information if it goes out of date.
Access to your information and corrections to it
You have the right to request a copy of the information that we hold about you. If you would like a copy of some or all of your personal information, please contact the Isabel Hospice Data Protection Lead in writing at Isabel Hospice, 61 Bridge Road East, Welwyn Garden City, Hertfordshire, AL7 1JR or by email to firstname.lastname@example.org.
We want to make sure that your personal information is accurate and up to date. You may ask us at any time to correct or remove information that you think is inaccurate.
Changes to our privacy notice
We keep our general privacy notice under regular review and we will place any updates on our website at the link below:
Changes to our privacy notice
We keep our general privacy notice under regular review and we will place any updates on our website.