IACR Patient + Public Involvement

IACR PPI Updates

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Helpful Links

We have compiled this document with lots of PPI helpful links to guide you.

What is Patient + Public Involvement (PPI)?

PPI is research carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.

IACR Council PPI Members

The IACR Public & Patient Involvement (PPI) has six members on its council.

Three members are people who have a lived experience of cancer, alongside three who are working in cancer research space on the island of Ireland.

Find Out More

Prof. Patrick G Johnston Award

Every year six early stage cancer researchers present their research to a live audience during the annual IACR Conference.

IACR PPI help them prepare their lay presentations at a communications workshop before the conference.

Find Out More

PPI Recruitment

Visit these organisations who are recruiting PPI to be involved in their research.

Patient Voice in Cancer Research

The Patient Voice in Cancer Research (PVCR) brings cancer researchers and those with a lived experience of cancer together.

Visit PVCR Website

Irish Cancer Society

The Irish Cancer Society research department are seeking PPI representation from individuals affected by cancer to participate in their research processes.

Visit ICS PPI

All-Island Cancer Research Institute (AICRI)

The overall aim of AICRI is to make science work for the patient, for society and for the economy.

Visit AICRI Webpage

Breakthrough Cancer Research PPI

Breakthrough Cancer Research aim to involve patients and the public in research through their Public Patient Initiative.

Visit BCR PPI

Insights from our IACR PPI members

What does the IACR represent to you?
In the IACR I found like mind peers. I feel valued, very much part of the team and have made so many friends along the way. I have been supported as I have grown in confidence. I am constantly inspired by the dedicated and genuine people I meet.

What does Patient Involvement mean to you?
If you had asked me when I started, I would have said I wanted to raise awareness and help those who came after me. I now realise it was also to help me heal and come to terms with all that happened.

What is your vision for IACR PPI?

Raise the profile and awareness of PPI in Cancer Research in Ireland
Increase PPI participation in the IACR Conference
Ensure that IACR early career researcher has opportunities to engage with PPI

How can the IACR PPI do this?

Be involved in designing conference sessions
Have visible presence during the annual conference
Involve and engage ethic minority groups and marginalised communities
Support early career researchers in grant applications

Kay McKeon, IACR PPI Champion

“Breast cancer screening in Ireland is provided via BreastCheck from age 50, but mammograms need to be routine much earlier than this.”

Colette was diagnosed with breast cancer shortly after turning 40. Her tumor was 9cm and had spread to her lymph nodes. She went through chemotherapy in 2019, followed by surgery and radiation therapy. Post surgery, Colette experienced lymohadema in her left arm and she continues to try to manage this with physiotherapy, compression and massage. Colette is awaiting reconstructive surgery. Colette continues to take daily medication, monthly injections and attend routine check ups.

Colette Maher, IACR PPI Contributor + Patient Advocate, 2021 - 2023

Pushpita had been living in Bangladesh, and was only 21 when she was diagnosed with thyroid cancer. It was a stressful moment for the whole family. However, Pushpita got her surgery and radiation therapy from Mumbai, and continued her follow ups in there.

It has been more than 8 years Pushpita is recovered from cancer. Even though daily medication and routine check ups are needed, Pushpita is living like a healthy person. That is because the cancer was detected in the early stage, and that implies how important it is to diagnose cancer earlier.

Since 2020, Pushpita has been living in Ireland, and now working as a pension administrator for Irish Life. The cancer journey has made her even stronger and even more passionate about life.

Pushpita Jui, PPI Council Minority Community Representative, 2021 - 2023

What does the IACR represent to you?
IACR represents an opportunity to see first hand the amazing research that is taking place here in Ireland, also as a patient it is an important opportunity to support this research and break down barriers between researchers and the public.

What does Patient Involvement mean to you?
The mantra goes “nothing for us without us” that is the essence of what PPI means to me as a patient and an advocate, without the input of patients for whom the research is ultimately supposed to benefit, valuable resources and time can be wasted, always find a way to engage with your target subjects before, during and post commencing your research, and to patients don’t be afraid of “what you don’t know, embrace what you will learn from engaging”.

Kay Curtin, IACR PPI 2018-2021

What does the IACR represent to you?
IACR represents a group of researchers, at different points in their research career, but with a common bond of passion for research. I can see it is more than “just a job”, it is a passion to ultimately impact in terms of prevention, diagnosis and treatment for people throughout Ireland who are diagnosed with cancer.

What does Patient Involvement mean to you?
Patient and carer involvement in research ensures the patient voice is central throughout the research process. It brings the expert knowledge of researchers into partnership working with patients and carers who are experts in living with the impact of cancer. This partnership working enhances and adds value to the research for benefit to patients and to excellence in health and social care.

Margaret Grayson, IACR PPI 2018-2021