Spotlight on Research Advocacy 

A research advocate is a person who links the patient community with scientific researchers and clinicians. They play the incredibly important role of enabling two-way conversations so that families can gain a deeper understanding of the research landscape, and patient needs are brought to the attention of the scientific community. Investing in neuroblastoma research that has the voices and needs of children and their families at its heart is paramount to our research mission, which is why our team have become fully immersed and established as patient experts in the neuroblastoma landscape. 

Between them, our Director of Research Nick Bird, Head of Research Leona Knox and Family Support Advocate Donna Ludwinski hold numerous key positions across paediatric cancer research associations. Whilst they work tirelessly to ensure that the science is pushing for real impact for children with neuroblastoma, there is always more to be done, which is why they have been committed to increasing the presence and influence of patient representatives in recent months. 

In the last 6 months, new formal advocate committees have been established in the Innovative Therapies for Children with Cancer (ITCC) consortium and SIOPEN, Europe’s leading childhood cancer organisation, both thanks to lobbying by our research team. Last year Nick Bird, along with 3 other patient advocates, submitted a proposal to the ITCC that they build an advocate committee to ensure sufficient patient involvement throughout all of their work. In November last year, he was welcomed as the Chair and Founding Member of that committee at their Annual Meeting- and met with much praise for the ambitious goals already set to be achieved. You can read more about ITCC and their mission here. 

In October, SIOPEN held their Annual General Meeting, where the executive committee review and discuss progress in the year to date and set out the year ahead. Our Head of Research Leona Knox was invited to present along with Nicole Scobie, President of Zoe4Life, on the importance of involving advocates in paediatric cancer research. Their views were incredibly well received and valued by the executive committee, who have decided to establish the formal advocate committee, led by Leona, Nicole and Nick, as a priority action. We are very proud of these important strides made by our dedicated team and look forward to sharing more updates on the progress of these committees as they develop. 

Patient advocacy and representation is a complex topic, and spans much further than research alone. We are always keen to help parents better understand this part of our work and its impact, and the part that they play as part of the patient community. You can contact us at [email protected] to learn more about this or any other aspect of our research work.