EPaCCS is short for ‘Electronic Palliative Care Coordination System’.

York and Scarborough hospitals are working together with other health providers to support patients in the last year of life with an electronic coordinated care record.  This will result in improved coordination of care and communication between professionals involved in the care of patients at the end of life across the locality.

What data will be collected and why is it required?

In order for your care to be efficiently coordinated it is essential that your information is shared with other organisations that you have, or will have, involvement with.  The following types of information will be collected and shared with these other organisations:

• Demographic Information (name, address, DOB, etc)
• Current Involvements (name and details of any other health and social care professionals involved with your care)
• Medical Information (diagnosis, allergies, medication, treatment plans etc)
• Legal Information (your expectations, wishes, and details about any power of attorney arrangements you may have)
• Special Requirements (spoken language, disabilities, care preferences)
• Preferred place of care

Your GP, or a member of your care team will be able to tell you exactly what information is collected and recorded on your EPaCCS.

Who has access to my data?

Only professionals and organisations that have involvement with your care will have access to your information.  This could be your GP, district nurse, Palliative Care team, or hospice staff.  The ambulance service is working towards having access in 2021.

Can I see my EPaCCs record?

Your care team will discuss the information in your EPaCCS record with you on a routine basis as part of your care plan. If you wish to have a print out of the information recorded, your care team will be able to provide it for you.

If you do wish to make a request for your full clinical record then you may do so by writing to any organisation that is involved with your care.  This is known as a ‘Subject Access Request’.

Your GP may already have the availability for you to view your wider clinical record online.  This will include your EPaCCS record. Please enquire with your GP to see if this is the case.

What happens if I don’t want my information shared?

EPaCCS is consent based, therefore we will not record information about you in this way unless you have given us instructions to do so. You can do this by providing verbal consent to your GP or a member of your care team.

If you are not in a position to provide consent then your legal guardian or advocate may do so in your place.

If you are not in a position to provide consent and you do not have a legal guardian or advocate then a medical professional will decide if an EPaCCS record is in your best interests. Please see the NHS website on Mental Capacity for further information.

If you do not consent to an EPaCCS record you will still be able to receive care and support from individual providers but it may be more difficult for professionals to coordinate your care and provide you with the very best support.

You may withdraw your consent for your EPaCCS record at any time by asking your GP or a member of your care team. In some circumstances it may be appropriate for professionals to share your data with each other or a third party if there is an overriding legal obligation to do so (for example the detection or prevention of criminal activities).

What is your legal basis for processing my data?

Each organisation will process your data in compliance with the conditions of the Data Protection Act 1998 and the General Data Protection Regulation.  As EPaCCS is based on consent then this is the main legal power for processing your data. However, each organisation also has their own legal powers to process your data for the purposes of providing you with medical care and treatment.

How long is my data kept for?

Your EPaCCS record will be kept for as long as your wider clinical record. Each organisation has their own retention schedule stating how long clinical records must be kept.  You may ask each organisation about their retention periods by contacting them directly.