Young People at the Heart of Research: The unseen advocates working to revolutionise childhood cancer treatment

Written by: Eadaoin Mc Kiernan
Written on: Saturday, 04 February, 2023

SBI's Peter McCarthy, Sharmila Biswas and Tânia Dias with members of the Young Person’s Advisory Group (YPAG) during their recent visit to SBI. (photo: Peter McCarthy)

World Cancer Day (WCD), celebrated on 4 February each year, is a global uniting movement bringing together people from all walks of life to rise to the burgeoning challenge presented by cancer and reduce its global impact. The emphasis is on working together, mobilising people, raising awareness, educating and reimagining. Each year on this day I am reminded of the awe-inspiring people that surround me at Systems Biology Ireland (SBI), UCD, who in their own ways unite efforts to “close the gap” in cancer care. One in particular who comes to mind is Dr Peter McCarthy, who only last Sunday opened the doors here at SBI to the Young Person's Advisory Group (YPAG), a recently formed union of young patients with cancer or former cancer patients (aged 12-29 years). This group comes together to meet with researchers, clinicians and other relevant stakeholder groups to provide advice on cancer services, clinical trials and research studies and to ultimately make these areas more accessible to those who are supposed to benefit from them. It was an incredibly uplifting morning at SBI with the room packed to capacity for a range of engaging discussions and lab tours.

Peter is currently pursuing a PhD in the childhood and adolescent leukaemia research group at SBI, under the supervision of Prof. Jonathan Bond. Leukaemia research at SBI is very much rooted in the clinic, with close ties to the National Children’s Cancer Service at Children’s Health Ireland at Crumlin. Prof. Bond’s team therefore wanted to involve and engage people affected by childhood blood cancer, and to give them a voice in scientific research.

The creation of the YPAG was kick-started by the fact that Peter is also the Medical Director of Barretstown, who have been crucial partners in setting up the YPAG due to their long-standing experience in enriching the lives of young people with serious illnesses, including cancer. This provided the impetus for Peter to drive the creation and development of the group over the past two years.  In collaboration with Barretstown, Peter, Jonathan, alongside SBI post-doctoral fellow Luke Jones, have built a coalition of willing participants with Dublin City University, Children’s Health Ireland, the Irish Cancer Society and Canteen Ireland all playing an active role in the YPAG partnership. YPAG currently has 10 members but is always looking for new young people to join.

(L to R) Alannah McIntosh, Theodora Ioana-Grosu, Luke Jones, Cosmin Tudose, Jonathan Bond, Melinda Halasz and members of the YPAG, January 2023 (photo: Peter McCarthy)

YPAG is only one example of the creative initiatives taken on by the blood cancer research team. In 2021, Peter and Jonathan  embarked on a new study to help treat children with leukaemia in Tanzania titled SALAMA (Studying Acute LeukaemiA Mutations in Africa, also the Swahili word for "safe and well"). This study, which is being carried out in collaboration with the international NGO, WeAreTLM, as well as Muhimbili National Hospital, the Irish National Children’s Cancer Service at Children’s Health Ireland at Crumlin, Genuity Science Ireland and The Little Princess Trust UK, has the WCD ethos “CloseTheCareGap” at its heart. It is using the technology of next-generation sequencing to help modernise leukaemia treatment in Tanzania. The goal is to bring leukaemia treatment in Tanzania up to the same level as other parts of the western world. When the study was launched in 2021 it was described as “a novel partnership with an exceptionally far reach, bringing together two countries, two continents, and countless lives in between”.  Last September, Peter visited the clinic in Tanzania for the SALAMA project, sharing his experience on the SBI Blog.

Emmanuel, Dr Clara, Heavenlight & Peter McCarthy at the SEREN Lab in Tanzania, September 2022
(photo: Peter McCarthy)

Peter is currently working as a Locum Consultant Haematologist between Children’s Health Ireland at Crumlin and St. James’s Hospital, where he focusses on the care of adolescents and young adults with cancer. When he is not treating young patients in Dublin he is either visiting the medical facilities in Tanzania or at the research labs in SBI working diligently with Prof Bond and the wider group on progressing the YPAG and the SALAMA projects. Although Peter’s schedule might be hectic you seldom meet him without a smile on his face and a welcoming hello. So, on what is the 23rd World Cancer Day, I can only admire Peter and the other unseen advocates around us for their tenacity and passion and wish them well in their pursuits. May we all learn a little from them.