Why we collect information about you
We receive information about you from you, those important to you and from other people involved in your care (e.g. your GP or hospital doctors and nurses). We use this information to keep records about you so that we can provide safe and effective care.
It is necessary to share your information with the healthcare professionals who provide your care and treatment and it may be necessary to share your information with other healthcare professionals outside the Hospice.
Your records are stored electronically or on paper and may include:
Information that fits into two broad categories – demographic and clinical.
Demographic information
Typically, this is your:-
• Personal details like name, address, gender, date of birth, ethnicity, religion
• Contact Details (telephone, email)
• Name and Contact Details of people involved in your care
• Name and Contact Details of those important to you
• Name and Contact Details of your next of kin
• GP Practice
• Language you prefer to use
• NHS number
The confidentiality, integrity and availability of your information are taken very seriously and we make every effort, within the resources available to us, to ensure the information
we hold about you is kept as secure as it can be.
Clinical Information
Typically, this includes details of your:-
• Care provided by the Hospice and any diagnosis(es)
• Medicines and any bad reaction you may have had to any you have taken.
• Allergies
• Health condition(s)
• Care plans and assessments
• Appointment dates and times and contacts you have had with our healthcare professionals
• Admission details
• Family or work details that are relevant to your care
• Mental Capacity to make your own decisions about your care and treatment
How your information is used?
It is important that the hospice team has up to date and accurate records about you. This helps us ensure that you receive the best possible care. It also means that your concerns can
be investigated properly should you have any worries or complaints about your care. With your agreement, those important to you may be kept up to date with your care. We
also may use your information (usually anonymised) to:-
• Check the quality of care we provide
• Support public health
• Examine how we spend money
• Plan, manage and develop the services we provide
• Conduct research
• Support education and training
How your records may be shared with other professionals to help you
We may share relevant information from your records with each other at St Raphael’s Hospice and with your GP and other health and social care professionals. In these circumstances, we only share relevant information for clinical purposes and if these people have a genuine need for it, or if we are under a legal obligation to do so. If you give us any
specific instruction not to share your information in this way, we will respect this to the extent that we are not prohibited from doing so by any legal obligation, although this may
affect your care. If it will affect your care then we will let you know.
St Raphael’s Hospice uses an electronic record system called EMIS. EMIS is used by many healthcare organisations, such as GP practices and community nursing teams. Effected from
December 2023 and if your GP uses EMIS and has activated the data sharing agreement, we and your GP practice will be able to view the information they and we hold about you on
your electronic patient record. We call this a shared patient record. The same applies for any community nursing and allied healthcare professional teams that you are known to.
This means that we can share information about you electronically between the hospice and your registered GP and community team. When possible, the St Raphael’s healthcare
professionals caring for you will ask for your consent to access your shared EMIS record.
You can opt out of the sharing agreement at any time.
The benefits of giving your consent
Sharing your individual record enables:-
• Quick access to relevant information, which leads to fewer delays in the provision of care
• Information held about you to be up to date and consistent
• Improved communication between healthcare organisations involved in providing your care
• Greater accuracy with a reduced risk of critical information, such as allergies, being missed
• More efficient use of clinical and administrative time with less duplication
A detailed leaflet “EMIS Shared Record” provides further information on the shared record and is available on the Hospice website and upon request.
Using your information without your permission?
Rarely does this ever arise but we may be required by law to give out information about you in the interests of:-
• Public health
• A Court or Police request
What if I don’t want my information shared?
As part of the normal first assessment process you should be asked by one of our healthcare professionals that you consent to your information being shared. If you do not consent we
will not disclose nor allow disclosure of your information via the shared record without your permission unless there are exceptional circumstances such as a legal requirement or the
health and safety of others is at risk. The healthcare professional will discuss with you the implications of not sharing your information and how this may affect your care e.g. having
essential information about your care available out of hours or in an emergency.
Data Protection and Data Subject Access
The General Data Protection Regulation (EU) 2016/679 (GDPR) safeguards the processing of your information. You are allowed by law to see what is held. Requests for access should be made in writing either to the Hospice’s Director of Quality and Improvement or the Hospice’s Caldicott Guardian. The Hospice must respond to your request within a calendar
month of receipt of required information for applications under the Data Protection Act and within 40 days for applications under the Access to Health Records Act 1990. No fee is to be charged to service a data subject access request unless further copies are requested by the data subject.
Electronic Patient Records
All patient records at St Raphael’s Hospice, including copy of correspondence, are held in an electronic patient record (EPR). Benefits of the EPR are:-
• Confidentiality: Access can be restricted to staff who need to care for you. Allows for enhanced security of information.
• Integrity: Assists improvements in completion and accuracy with more consistent record-keeping. Supports safe care by reducing potential errors.
• Availability: Access can be restricted to staff who need to care for you. Your information can be shared between staff who are working together to provide your care.
Caldicott Guardian
The Caldicott Guardian is the senior person responsible for protecting the confidentiality of people’s health and care information and making sure it is used properly. The Caldicott
Guardian for St Raphael’s Hospice is Dr Gabrielle Tamura-Rose, Consultant in Palliative Medicine. She is responsible for all aspects of compliance with the Data Protection Act and
is able to advise on issues of patient confidentiality, in accordance with the Caldicott Principles. Any issues or concerns involving the use and protection of information held by
the Hospice should be directed to her in the first instance