NCIS Patient Information Leaflet

What is the National Cancer Information System?

The National Cancer Information System - NCIS is a single national computerised system that

records and stores information relevant to your health care.

This information includes your:

  • Name and address
  • medical history
  • cancer diagnosis
  • treatment possibilities
  • cancer drug treatment (also known as chemotherapy)

When Will the NCIS be introduced?

The system will be introduced gradually from 2019 to all public hospitals providing cancer services, including Children's health Ireland at Crumlin

How is your information on the NCIS used?

Before a decision is made on your treatment, your medical team will meet and use the information on the NCIS to plan the best treatment for you.

How does the NCIS work?

Until now, the record of your cancer diagnosis and treatment has only been available in the hospital where you had that treatment.

But now through the NCIS, medical teams in any hospital you attend can access your information if they have the NCIS.

What are the benefits of the NCIS?

The main benefits of the NCIS are:

  • easier access to your cancer care information for your medical team
  • information is available to all staff involved in your care even if it is not in the hospital you usually attend
  • better security of your personal information
  • greater safety in prescribing chemotherapy

Who will have access to the NCIS?

The nurses, doctors and other healthcare workers who care for you before, during and after your cancer treatment.

What will happen if I receive treatment in another hospital?

If the hospital you have moved to has the NCIS, your new medical team will be able to see all your cancer care information.

What will change for me?

If the hospital where you are having treatment uses the NCIS then your medical team will record:

  • your information
  • the details of your cancer drug treatment (dose given and other relevant information) on the NCIS

Your medical team may also check that the barcode on your cancer drugs (chemotherapy) matches the barcode on your hospital identity band.

This is a safety check to make sure you get the correct treatment.

Where will my information be kept?

Your information will be stored on a secure, central computer system which the Health Service Executive (HSE) will manage and control.

How will my information be protected?

The HSE must follow the requirements of the data protection laws to protect your information.

The laws and regulations include:

  • EU General Data Protection Regulation
  •  Irish Data Protection Acts
  • Irish Data Protection Acts

The HSE will strictly control access to your healthcare information.

Do I need to give permission for my information to be put on the NCIS?

No. Hospitals have always recorded information about your care, on paper or on computer systems.

Only information to do with your cancer diagnosis and treatment will be stored on the NCIS.

Will I still have a paper chart?

You will still have a paper medical chart.

Who can answer my questions?

If you have any questions about how the HSE stores your information, please contact the medical records department in your hospital.

If you would like to see information stored about you on the NCIS, you can contact the following:

  • your doctor
  • your nurse
  • the hospital data protection officer

HSE consumer affairs managers can also give you advice and their contact details are available on:

HSE Website

www.hse.ie/cancer/ncis

Abbreviations

  • HSE: Health Service Executive
  • NCIS: National Cancer Information System