Privacy Notice: EPaCCS
Patients who are at the end of life come into contact with many health and care professionals. The challenge has been in enabling different care providers to share information about an individual patient’s care and end-of-life preferences in a safe, up-to-date and efficient way.
Treatment choices, how and where care is delivered and the preferred place of death are at the heart of end-of-life care. Patient choices are not static and often change during the last weeks and months of life. Typically, preferences for end-of-life care are collected by GPs and inputted into their GP system. However, this may not always reflect the latest wishes of the patient and may not be available to all of a patient’s health and care providers.
EPaCCS enables the recording and sharing of a patient’s care preferences and key details about their care at the end-of-life. As it is electronic it can easily be shared 24/7 between all of the clinicians and carers involved in the patient’s care across organisational and geographical boundaries.
An EPaCCS record can be created, updated and shared by any member of a patient’s health and care team, subject to locally-determined pathway and user administration settings. The EPaCCS record is a summary record, intended to provide an easily accessible view of the information that carers need in an end-of-life setting.
We process personal information because it is necessary to comply with our legal obligations and perform our public duty.
Health and social care organisations involved in delivering end-of-life care to patients are Joint Controllers for the purpose of using the shared EPaCCS system.
To find out more about EPaCCS and how it supports end-of-life care in Humber and North Yorkshire go to:
Digital Technology - Humber and North Yorkshire Health and Care Partnership
If you have any queries please contact:
Personal information relating to you will be received from a number of areas. Some of the information about your medical history, such as medications and conditions, will come from your GP record. Information about your preferences for how and where you receive care at the end-of-life will be provided by you when you share this information with the different health and care professionals who care for you.
We only collect the personal information necessary about you in order to help us deliver the right service or meet legal obligations.
We will share information about you that will help the health and care professionals who provide your care make the best decisions about your treatment and ensure that your preferences and wishes are respected.
This includes: your demographic details (name, contact details, NHS number, gender), your medications, diagnoses and problems, CPR decision, preferred placed of care and preferred place of death.
Your information will be used to ensure that the health and care providers that care for you have the information they need to provide the best care for you and to ensure that your wishes and preferences at the end-of-life are known, shared and respected.
The information within EPaCCS will only be shared with health and care professionals that are directly involved in delivering your care. These organisations include: GP practices, hospitals, hospices, care homes, Out-of-Hours services, NHS 111, community service providers and social care providers.
As health and social care providers we have determined that the appropriate legal justification upon which this information can be shared for the purposes of the EPaCCS end-of-life shared care record is the delivery of direct care. This is in line with the recommendations of Caldicott Reviews of 1997, 2013, the provisions of the Data Protection Act (DPA) 2018 and the General Data Protection Regulation (EU) 2016/679 (GDPR).
The applicable articles in GDPR are:
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Article 6 (1)(e) – “processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller”.
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Article 9 (2)(H) - “processing is necessary for the purposes of preventive or occupational medicine, for the assessment of the working capacity of the employee, medical diagnosis, the provision of health or social care or treatment or the management of health or social care systems and services on the basis of Union or Member State law or pursuant to contract with a health professional and subject to the conditions and safeguards referred to in paragraph 3”.
- Article 6 (1)(B) - “processing is necessary for the performance of a contract to which the data subject is party or in order to take steps at the request of the data subject prior to entering into a contract"
We will only keep your personal information for as long as we need to in order to give you the service you need, unless we must keep it for legal reasons. You have the right to remove your approval for us processing your end of life preferences at any time.
It will only be held for the periods stated in our Records Management Policy and Retention Schedule, after which it will be securely destroyed.
You have the right to:
- Ask to see the personal information we hold about you.
- Ask us to change it if it is wrong.
- Ask us to delete the information we hold about you.
- Ask us to limit the way we use your personal information.
- Have your information transferred to another authority.
- Complain to the Information Commissioner’s Office.
You can withdraw your approval to process your personal information and share your end of life preferences at any time.
You have the right to submit a complaint if you are unhappy with the way your information is handled or disagree with a decision made by us regarding your information.
In the first instance, please contact the service you are dealing with to try to resolve the matter.
If you remain unhappy with the outcome you receive, you may wish to contact the Information Commissioner for an independent review by visiting their website: https://ico.org.uk/concerns/
Name: Helen Jones
Email: yas.dpo@nhs.net
