ENTYAC is actively evolving within the growing community of Adolescents and Young Adults (AYA) cancer in Europe. In the September 2023 meeting, the European Network for Teenagers and Young Adults with Cancer (ENTYAC) working group shared and discussed their work, along with broader initiatives across Europe. The group strategically outlined ENTYAC's focus for 2023-2026 in collaboration with JANE, Strong-AYA, EU CAYAS-NET, and other national initiatives.
ENTYAC chose a primary focus on:
- Raising awareness, among the communities of professionals, patients, carers, policy-makers
- Increasing quality of care by sharing knowledge among the communities of healthcare professionals, patients, carers, policy-makers
- Mapping quality of care, by the members, their colleagues and others interested in AYA completing regular surveys of service quality.
By accomplishing the aforementioned objectives, the anticipated outcomes to be expected by the end of 2026 are as follows:
- A wide engagement about AYA cancer
- A more expert workforce to AYA cancer care
- A loud and clear voice for AYA with cancer
- A widening of interdisciplinary and patient-centered ways of working in the AYA cancer field.
In early 2024, ENTYAC will soon initiate contact with each of its members, seeking their contributions to the next steps. There is room for all of you in this existing next phase of ENTYAC. For more information about ENTYAC and/or to join the (free) membership please contact Emily Connearn, ENTYAC administrator: e.connearn@leeds.ac.uk
ENTYAC & the STRONG-AYA consultation
Strong-AYA is an EU-funded project co-ordinated from Amsterdam, involving multiple European centers and research teams. Launched in October 2022, the project is set to continue its activities until 2027. The project aims to create a new, interdisciplinary, multi-stakeholder European network to improve healthcare services, research, outcomes and policies for Adolescents and Young Adults (AYAs) with cancer.
Through using innovative federated learning technology, Strong-AYA aims to tackle the underrepresentation of AYA’s experiences and outcomes by creating AYA data ‘ecosystems’ in seven European cities. Clinical services in each of these seven cities will (under informed consent) collect a new standard set of the most important data (known as a ‘core outcome set’) of both clinical and patient reported outcome measures. This locally aggregated data will be securely analyzed through machine learning on a confidential federated learning platform, previously successful in other cancer research. This approach facilitates collaborative analyses of AYA cancer outcomes across Europe. This information can then be used by patients, researchers, policy-makers and all those that have a stake in the care and management of AYA’s with cancer to further plan services, understand individual care, and boost for future research.
ENTYAC is in co-operation and supported by Strong-AYA. Following consultation with clinical and research colleagues in the Strong-AYA consortium, ENTYAC has recently consulted on the Strong-AYA initial list of key research questions that can guide the data and analyses we will carry out. We would like your help to rank these research questions in order of priority in your view. We extend our sincere thanks to everyone who has already shared their insights on these research questions, and if you haven't had the chance yet, we invite you to do so by consulting the survey link here.
For more information about this programme, see the STRONG-AYA Project website.