Welcome to the Public and Patient Involvement section of our website!
We are always keen to involve people with an interest or lived experience of cancer to take part and feed into cancer research.
Currently we are organising workshops to involve people with a lived experience of ovarian cancer, either as a patient themselves, a friend or family member of an ovarian cancer patient.
If you are interested in contributing please fill out the google form below:
এই ফর্মটি ইংরেজি এবং বাংলা উভয় ভাষায় তৈরি করা হয়েছে। বাংলা সংস্করণের জন্য এখানে ক্লিক করুন:
tinyurl.com/PPIsignupformBengali
Previous PPI work by the group
IMPROVER – Involving Men with Prostate Cancer in Engaged Research
The IMPROVER survey was designed by UCD researchers in partnership with research teams at the Irish Cancer Society, led by Dr Claire Kilty and Breakthrough Cancer Research, led by Dr Frances Drummond with significant input from prostate cancer patients, nurses, urologists, general practitioners, radiation oncologists and biomedical scientist.The aim of the IMPROVER survey was to collate the experiences of patients and healthcare professionals in the early detection, diagnosis, and management of prostate cancer. This information allows Associate Professor Antoinette Perry and her research team to identify the most pressing unmet needs for men, their families and healthcare professionals. Enabling this information to inform research being undertaken by the team.
“The IMPROVER survey is a result of a wonderful collaboration between patients, clinicians and scientists. It has been created with a view to quantifying the difficulties experienced by patients during the diagnostic pathway. This knowledge will be critical in delivering patient-centric solutions. We would really appreciate people taking the time to complete this survey and sharing it with a friend or colleague.” – Assoc. Prof. Antoinette Perry
This project was funded by the Irish Research Council
Precision Oncology Ireland – Invisible Spectrum Series
Precision Oncology Ireland (POI) believes patient engagement is at the forefront of the new era of
precision medicine. A major element of their public and patient involvement plan encompasses the
Invisible Spectrum series, which works to engage minority community groups in cancer research and
STEM-based education. Dr Arman Rahman, the Translational Research and Engagement Manager of
POI has played a key role in organising the Invisible Spectrum events. Several CBT lab members have
also participated in the organisation of these events.
Invisible Spectrum 2020
For Science Week 2020, POI organised a programme of events alongside Arabic Muslim and
Bangladeshi community groups. The event incorporated online multi-lingual workshops discussing
current and emerging cancer treatment and screening strategies, as well as a children’s art
competition, to allow maximum community engagement.
Invisible Spectrum 2.0: My DNA, My Health
The focus of Invisible Spectrum 2.0 was to establish a stronger connection between researchers and
the Bangladeshi community in Ireland. This online event was focused on the topic of cancer genetics
with key speakers such as Dr Terri McVeigh, a specialist in Cancer Genetics. The event aimed to
create a template for discussing complex research topics with the public. Again, to ensure maximum
engagement, presentations were delivered in Bengali as well as English, with a Science-based Video
Challenge to allow children to take part.
Invisible Spectrum 3
2022 saw the first in-person Invisible Spectrum event. Members of the Bangladeshi community were
invited to attend a session encompassing presentations from leading cancer researchers, breakout
discussion sessions for men and women, and a cell-biology focused art workshop for all the children.
A conversation about Ovarian Cancer – organised by Breakthrough Cancer research
As part of the ‘Cancer Conversations’ series run by Breakthrough Cancer Research, people with a personal experience of cancer, either themselves or through a loved one, chat with some researchers working with Breakthrough Cancer Research. Deirdre O’Raw, who was diagnosed with ovarian cancer in July 2020, met with Associate Professor Antoinette Perry and PhD student Asia Jordan of University College Dublin to discuss ovarian cancer and their research.
Deirdres main symptom was a hard swollen stomach that would not go down. She had surgery and chemotherapy and is now on maintenance therapy – PARP inhibitors, to reduce the risk of the cancer recurring. Catching ovarian cancer early can allow for more effective treatment options, but there is still no screening test for this disease. This research aims to identify DNA markers that could be used to detect ovarian cancer at an early stage using blood and/or urine. If successful this research could lay the foundations for the development of this test to improve survival from ovarian cancer. This project is funded by Irish Research Council in partnership with Breakthrough Cancer Research through the postgraduate enterprise partnership scheme.
Involving patients in lab-based translational research.
Adele Connor was awarded a PhD scholarship from the Irish Cancer Society in July 2020 and began her PhD in January 2021. During the application process Adele contacted OvaCare (an Irish ovarian cancer support network) to highlight her plans for involving patients in her research project. Following initial discussions, the group was interested in being involved and a patient advisory committee was established. This committee of two first met on Zoom to help develop Terms of Reference documents, but since then has grown to include six patient participants.
Patient advisory committee:
Bridget Carr
Lorraine Mc Nally
Deirdre O’ Raw
Katayoun Bahramian
Una Carroll
Ingrid Halligan Dunne
Adele’s research is focused on imaging tumour cell responses to novel drug combinations in order to develop personalised treatment for high-grade serous ovarian cancer patients. One of the first questions that needed answering was what drug(s) should be tested. Clinical trials provide important information about safety and efficacy, but they do not provide an insight into the impact of a drug on a patient’s quality of life. To understand this, Adele spoke to her patient advisory committeee who had the opportunity to meet at UCD in September 2022.
Five patient committee members (most of whom were meeting for the first time in person) were given a laboratory tour, where they had the opportunity to view ovarian cancer cells under a microscope and ask any questions they had. This was followed by a brief presentation about Adele’s research where she highlighted four specific questions about treatment experience, which helped to guide a discussion over tea and coffee.
This discussion fed directly into the experimental plans. For example, it was understood that PARP inhibitors (a targeted therapy for ovarian cancer) still has some very negative side effects. The original experimental plan was to include just one PARP inhibitor, but as a result of this discussion Adele has now decided to include a range of PARP inhibitors in her experimental design with the ambition of providing more options to patients. This decision is a clear and obvious positive consequence of involving patients in lab-based translational research. The day was finished by a lunch at the University Club where the committee could chat outside the confines of ‘patient’ and ‘researcher’.
COLOMARK: European-wide researcher training network on Colorectal cancer partners with the UCD Patient Voice for Cancer Research
Dr David Hughes together with the UCD PVCR (Patient Voice for Cancer Research) are partners in a Marie Curie EU DN (doctoral training) network called ColoMARK. This integrates 17 teams with multidisciplinary expertise (omics, epidemiology, microbiome, circulating tumour DNA, bioinformatics, statistics & machine learning, assay development, circulating RNAs, circulating tumour cells, tumour profiling, clinics) aiming at the identification and development of novel colorectal cancer (CRC) biomarkers via state-of-the-art liquid biopsy approaches. There are 9 doctoral candidates (DCs) who will all be recruited into the network by the end of this summer and who will then register for PhD programs. ColoMARK will provide cross- and interdisciplinary innovative training with special emphasis on transversal competences to these DCs. Our first training workshop for them will be in UCD early next year and will involve patients within PVCR in an interactive workshop with the students. The objective is to embed the principles of PPI right from the early stage of their training and to provide them a roadmap for how to incorporate and benefit from PPI in their projects.
Contributing to the The European Code against Cancer
Dr David Hughes has led several research studies using the European Prospective Investigation into Cancer and Nutrition (EPIC) cohort study of over half a million European subjects. This cohort study is co-ordinated by WHO/IARC (International Agency for Research on Cancer, Lyon, France) and study findings have contributed to IARC’s involvement in drafting The European Code against Cancer (https://cancer-code-europe.iarc.fr/index.php/en//), which provides a clear message on knowledge on cancer risk factors and cancer control efforts to stakeholder organizations, government health agencies and the wider public.
Outreach:
Choirs for Cancer
Choirs for Cancer is an initiative co-founded by Precision Oncology Ireland, the Patient Voice in
Cancer Research and the All-Island Cancer Research Institute. It marks World Cancer Day (4 th
February) by inviting hundreds of choirs, patients and researchers to come together to pay tribute to
those touched by cancer. Prof. William Gallagher is pivotal in the organisation of this event, with the
help of several volunteers from the CBT lab.
In 2020, Choirs for cancer was held in UCD and showcased 10 choirs, with several presentations and
stories shared by both cancer researchers and patients. The event finished with a powerful and
emotional group performance by all 10 choirs of ‘Something Inside So Strong’, which can be seen in
the video below. The event was a huge success, with #choirsforcancer2020 gaining over 84,000
mentions on social media. In 2021, Choirs for Cancer was held online, encompassing singers,
patients and families of all ages joining from Ireland, America, Sweeden, Argentina and many more.
This demonstrated that while cancer has no borders, the cancer support network also spans the
globe. Choirs for Cancer was back in UCD for 2023. The event was bigger than ever, hosting many
choirs, soloists, researchers, patients, and families. The event was rounded off by a spectacular
Fleetwood Mac tribute performance by Prof William Gallagher and colleagues, as seen below.
Raising awareness of ovarian cancer symptoms with BEAT stickers
PhD students Adele Connor, Romina Silva, Claire Hughes, Lea Schafer and Asia Jordan handed out 500 envelopes containing stickers and an information leaflet to UCD staff and students as part of a Take A Look In The Mirror Campaign. This campaign aimed to raise awareness of the symptoms of ovarian cancer and to acknowledge the almost 500 women diagnosed with ovarian cancer in Ireland in 2020. The stickers highlighted the symptoms of ovarian cancer using the B.E.A.T. acronym: Bloating, Eating difficulties, Abdominal pain, and Toilet changes. Women with ovarian cancer may experience one or more of these symptoms. But of course these are symptoms healthy women often experience. Awareness can allow you to monitor whether these symptoms are worsening or just becoming more persistent. The idea behind the campaign was to encourage women to put these stickers in a place they will see them frequently, such as the bathroom mirror to encourage daily check-ins. The sticker also has a QR directing people to www.thisisGO.ie where they can get further information.
