Privacy Notice: EPaCCS

Patients who are at the end of their life come into contact with many health and care professionals. The challenge for us is how we can enable 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 (EoLC). Patient choices are not static and often change during the last weeks and months of life. Preferences for EoLC are usually collected by GPs and added to their system. However, this may not always reflect the latest wishes of the patient and may not be available to all 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 their life. As the patient’s preferences are stored electronically, they can easily be shared 24/7 between all of the clinicians and carers involved in the patient’s care, whenever and wherever they need it.

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. EPaCCS is a summary record, intended to provide an easily accessible view of the information that carers need in an end of life situation.

We process personal information because it is necessary to comply with our legal obligations and perform our public duty.

Our Trust, along with other health and social care organisations, deliver end of life care to patients. We are all data controllers with a shared purpose of using EPaCCS.

To find out more about EPaCCS and how it supports end of life care in Humber, Coast and Vale, please visit the following website:

If you have any queries please email

Personal information that relates 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 your life will be provided by you when you share this information with different health and care professionals that deliver your care.

We only collect the personal information necessary about you in order to help us deliver the right service or meet legal obligations.

The information we will share about you is to make sure your preferences and wishes are respected. These include:

  • Demographic details (name, contact details, NHS number and gender)
  • Any medications you use
  • Diagnoses and problems
  • CPR decision
  • Preferred placed of care
  • Preferred place of death.

Your information will be used to make sure that health and care providers know how to deliver the best EoLC. It’s important that your preferences are well known and shared with everyone that cares for you.

The information within EPaCCS will only be shared with those directly involved in delivering your care. These organisations include:

  • GP practices
  • Hospitals
  • Hospices
  • Care homes
  • Out-of-hours services
  • NHS 111
  • Community service providers
  • Social care providers.
  • Emergency Ambulance Service (999)

As health and social care providers, the appropriate legal justification for sharing your personal information is for the purposes of the EPaCCS end of life shared care record and to know how we should deliver 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 EU General Data Protection Regulation (GDPR) 2016/679.

The applicable articles in GDPR are:

  • 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”.

  • 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”.

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: