April 3, 2019

The UCD Patient Voice in Cancer Research Workshop - Wednesday 10 April 2019

Calling all patients, survivors and carers: Have your say in conducting a survivorship experience study.

The aim of this Patient Voice in Cancer Research (PVCR) workshop will be to ensure that patient voices guide and shape the design and preparation of vital cancer survivorship needs assessment research. This will help ensure that information collected by the National Cancer Registry Ireland (NCRI) reflects the true survivorship experience.

A major focus of the current National Cancer Strategy 2017-2026 is the development of high-quality cancer survivorship care, to ensure that Irish cancer survivors have an optimal quality of life, and the best hope of thriving beyond their cancer diagnosis.

Central to this focus, is to understand a cancer survivors' own experience, and use this information to best decide how to deliver a model for survivorship care in Ireland. This means a better understanding of the health and quality of life, as cancer survivors see it, and their unmet needs which may include physical and psychological care needs but also other needs such as information, finance and spiritual issues.

To this end, as part of the recommendation 41 of the National Cancer Strategy, the National Cancer Registry Ireland (NCRI) are working closely with the Irish Cancer Society and the National Cancer Control Programme to prepare a research study to collect this important information directly from cancer survivors, with a view to planning and monitoring a work programme to improve cancer survivor experience. The UCD Patient Voice in Cancer Research is delighted to collaborate with the NCRI to inform the framework for a survivorship experience study.

The PVCR are seeking patients, survivors and carers to attend this workshop and input into this important piece of cancer survivorship research. For further information and to register please contact the PVCR at


10:30 am Registration, refreshments & exhibition by patient support groups

11:00 am Presentation: What is the NCRI and how can patients contribute to it?

11:15 am Workshop on how best to conduct a cancer survivor survey facilitated by Claire O'Connell, freelance journalist.

- Brief outline of aims of the study and proposed methods (5 mins)

- Topics:

  • How best to contact study participants
  • Handling patient survey data
  • How best to measure cancer survivors unmet needs
  • Questionnaire design and content
  • Analysing the results and letting patients and the health system know about the study findings

- Q & A session

1:30 pm Light lunch

2:00 pm UCD Relay for Life (Devlin pitch) - participants are welcome to join the survivor lap marking the start of this 24-hour fundraising event by UCD students

About the National Cancer Registry Ireland (NCRI)
This State Agency based in Cork and funded by the Department of Health. It was established in 1991 to collect information about patterns and trends in cancer in Ireland. To do this they record all new cases of cancer and primary treatment by working in partnership with all public and private Irish hospitals. This work helps to plan and evaluate cancer policies and services and also facilitates research. The NCRI also contribute to international cancer survival research to monitor how Irish cancer outcomes compare to other countries. An important aspect of the work of the NCRI’s work is that they aim to capture every single cancer patient so that they can monitor how the health system works for everyone.