Electronic Palliative Care Co-ordination System (EPaCCs)

Identifying patients who may be in the last year of life is an important step in providing good quality care.

Once patients have been identified, healthcare professionals want to take into account the wishes and preferences of those patients and work with them and their families and friends to help plan their care. Often this involves a number of different services. Good communication and coordination between these services is an essential part of providing quality care. Locally, this is done through a system called ‘EPaCCs’.

Information for Patients about EPaCCS.

What is EPaCCs?

EPaCCS is short for ‘Electronic Palliative Care Coordination System’. The health and local government authorities in Harrogate and Rural District are working together to provide patients in the last year of life with an electronic co-ordinated 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 district.

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, etc)
  • Legal Information (your expectations, wishes, and details about any power of attorney arrangements you may have)
  • Special Requirements (spoken language, disabilities, care preferences)

 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.

Will my information be included in official statistics?

The Harrogate Working Together project group will use your personal information to develop statistics on the effectiveness of end of life care in the Harrogate District. These statistics will be anonymous and therefore your personal data will not be identifiable.

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.

EPaCCS is only available to organisations that have signed up to the EPaCCS scheme. The full list of organisations that are currently involved with EPaCCS is:

Harrogate and District NHS Foundation Trust
Lancaster Park Road
North Yorkshire

Harrogate and Rural District Clinical Commissioning Group
1 Grimbald Crag Court
St James Business Park

Saint Michael’s Hospice
Crimple House
Hornbeam Park Avenue

We will never pass your information on to a third party for the purposes of sales or marketing. However, we may need to disclose your information to other third parties if we have a legal obligation to do so – for example the detection or prevention of criminal activities.

Please enquire with your GP, or a member of your care team, to find out which organisations can access your individual EPaCCS record.

Can I see my EPaCCs record?

Your care team will discuss the information in your 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’. A full list of organisations and their corresponding addresses can be found in the section ‘Who has access to my data’ on this webpage.

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 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 you 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).

How and where will my data be stored?

Your data will be stored as an independent template within your wider clinical record on the SystmOne database. SystmOne is owned and hosted by The Phoenix Partnership (TPP) Systems. For more information on SystmOne and TPP please click here.

Is my data secure?

Each organisation that is signed up to the EPaCCS scheme has vigorous security safeguards in place to ensure your data is secure from unauthorised access at all times. This includes, but is not limited to, mandatory data protection training for all staff, cyber security software installed on organisational systems, and 24hour site security.

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. A full list of organisations and their corresponding addresses can be found in the section ‘Who has access to my data’ on this webpage.

How do I complain about how my data is being used?

You may complain to any organsiation that is involved with your care about the way that they have handled or disclosed your data. You can do this by writing to each organsiation individually and they will be able to inform you of their complaint’s procedure. A full list of organisations and their corresponding addresses can be found in the section ‘Who has access to my data’ on this webpage.

You also have the right to complain to the Information Commissioner’s Officer. You can do this by writing to:

First Contact Team
Information Commissioner’s Office
Wycliffe House
Water Lane

[email protected]

For any further information about EPaCCS please ask your GP or any other person involved with your care. For any further information about your information rights then please visit: www.ico.org.uk.