Our events

ENTYAC Winter Meeting - Influencing AYA cancer policy at local, regional and national levels.

Friday 6^th February 2026 - 9am - 4.30pm (GMT)

Summary of presentations and discussion

This was a wide-ranging, highly informative and enjoyable virtual meeting, where experts in Adolescent and Young Adult (AYA) cancer policy, practice and care joined to develop their shared understanding of how to improve AYA cancer services across Europe.

Representatives from many of the recent Horizon Europe funded research programmes were represented, as well as the Network of Expertise and national clinical services, AYA cancer health care professionals, charities and advocates, researchers and local service managers.

The last five years have seen a huge positive wave of interest in AYA cancer care, outcomes and research not only across Europe, but globally. Professor Dr Dan Stark and others from France, the UK, Netherlands, Denmark and Eire described the current established services in place and also the ongoing developments in several European nations.

Malvika Vyas provided expert clarification on the complex mix of policymakers that has developed over the last 40 years, and how their work interacts between citizens, member state and EU policy imperatives, illustrating this with the way the JANE-2 Network of Expertise in AYA with Cancer (2024-2028) draws each of these policy areas together. The vast (but perhaps currently threatened) financing of cancer care and research by European governments and the EU was made plain, and the battle that is required by each of us to maintain sufficient funding for AYA cancer improvement across funding systems set out.

The flow of information from science to policy impact was described, and how researchers are obliged to take specific actions to underpin policy change, to demonstrate where the value lies within supra-national co-ordinated working.

Johan De Munter described the information required to make a bid to improve a member state’s AYA cancer policy, from his experience in Belgium. Demonstrating distinct unmet needs (mapped against the existing situation for AYA cancer care), defining a locally logical and supported scope of AYA services, and being clear where national services relate to supra-national initiatives was emphasised. Johan then set out the minimum expectations for future policy-supported national services and defined how improvements would be measured, step-by-step, starting from the current situation moving on to then define the workforce implications of a new service policy, and how those would be met, within the chosen model (such as service centralisation or hub and spoke). Defining the governance structure that would take responsibility for the quality and timeliness of the Key Performance Indicators defined in policy is critical.

Next Dr Husson and Professor Van De Graaf from Netherlands identified where such data and information can come from, based upon the STRONG-AYA core outcome set (with its evidence-based and consensus-building mix of patient-centred and service-centred content) and the powerful and effective federated data system coming into place. This form of data can underpin value for taxpayers and patients and provide AYA-specific standardized process and outcome benchmarks, that describe progress over time against policy objectives. This is underpinned in the Netherlands by powerful multi-study prospective research data collection and analysis, based upon population data from the Cancer Register, to create a comprehensive national AYA cancer network.

The importance of, and routes to, finding many collaborations when developing AYA cancer service development were described by Dan Stark; through ENTYAC, through the Network of Expertise, through various ongoing research projects and through learned professional societies that are interested in AYA with cancer. AYA cancer care crossed many traditional ‘silos’ in cancer care and is a collaborative exercise.

Nathalie Gaspar described how French colleagues built a team to influence and deliver cancer evolving policy and research on AYA with cancer, over 20 or more years detailing how this began (as described also by Johan De Munter) from patient unmet need and clinicians’ awareness of specific challenges. Nathalie talked about how embedding excellence in epidemiology, and associations of all stakeholders (with charities and NGOs, lived experience at the heart) within coherent and strongly led groups led to initial policy followed by iterative improvement projects and measurement of outcomes.  This process of acculturation to these services remains an ongoing process requiring continual attention and thought, as change impacts upon different people and services in different ways over time.

Katie Rizvi attended the meeting and described the critical role of lived experience and advocacy, and the very latest developments in generating lived-experienced led research and policy influence. Building upon the history of this work through to the latest exciting initiative in the YARN project and beyond, ENTYAC members at the meeting received very specific new information on the basis of confidentiality.

In the afternoon, participants worked in two breakout groups to discuss the barriers and facilitators of AYA cancer services, the place of policy and potential next steps from their individual perspectives. Pragmatic challenges included identifying AYA patients to provide care, in complex and often inadequate clinical information systems. They discussed staff skill-mix problems, in the aftermath of financial pressures in healthcare systems, in particular in social care provision and administrative staff capacity, as well as End of Life care and survivorship. Those in attendance shared models that had worked in some settings, for making progress despite these barriers. These include adoption of blueprints and simple minimum standards of AYA care that systems with all levels of development can realistically aim for; digitalising patient assessment & support (to ease information standardisation and sharing); working with lived experience advocates to persuade of specific unmet need and working ever more imaginatively with charity partners. Participants discussed creating central repositories of good practice and professional education documentation, which is a project ongoing in ENTYAC and could be supported further as well as in local or national services. We identified the initial plans for an AYA cancer framework in Austria and Switzerland and perhaps in Portugal in the upcoming period, but there are challenges of maintaining consensus in Belgium. We encouraged all to work with their national delegates to the NoE and to seek inter-professional and inter-disciplinary engagement from across stakeholder groups.

To summarise the meeting, Dan Stark outlined several future question and potential actions that arose from the discussions.

• Ensure that as many services and nations with a focussed interest in AYA are taking part in the 2026 Horizon Europe bids.
• Contribute, or continue to contribute, to sustaining existing Horizon Europe projects, such as by adopting the Strong-AYA Core Outcome Set locally and seek the modest funds required to link this data into that system Engage with ever more AYA-focussed clinicians, providers and wider stakeholders such as healthcare insurers, pharma industry, and local service managers.  Prepare presentations about EU member state and local AYA initiatives for the ‘Global Accord’ (of Teenage Cancer Trust, Teen Cancer America and Canteen Australia) AYA cancer congress in London planned in the upcoming months.
• Contributing documents and engage in ENTYAC work, so that subgroups and similar work of healthcare professionals working at the ‘coalface’ with AYA can share their work and support each other to improve services.

Pre-meeting event invitation:

• Who are the policy makers?
• What information do they need?
• Where can we obtain the data to provide evidence for policy change?

• Gain insights into policy-making processes at multiple levels
• Learn strategies for evidence-based advocacy
• Network with professionals and organisations passionate about improving AYA cancer care

The European Network for Teenage and Young Adults with Cancer (ENTYAC)

Winter Strategy Meeting, 18^th February 2025

 “The shape of our cooperation for AYA with cancer”

Summary of presentations and discussion

This meeting was held online, led by ENTYAC, with presentations from:

Dan Stark, Andrea Ferrari, Katie Rizvi, Kenny Rodriguez-Wallberg, Owen Smith, Ivana Bozovic, Katrin Scheinemann, Simone Hanebaum, Anna Castleton

The meeting’s objectives were to collectively develop and clarify how the key organisations in AYA cancer should work in cooperation towards the common goal of improving the care of AYAs with cancer across Europe.

Members of the meeting were provided in advance with materials to review as were the leaders of the meeting. The key material was a Venn diagram type illustration of the potential relationship between JANE and ENTYAC going forward.

After an introduction scene and objective setting presentation by Dan Stark and Andrea Ferrari the findings of the ENTYAC members audit were presented, including as their key objectives of our members being having relevant and up to date resources readily available for them, hosting engaging and informative events, providing a forum to stimulate discussion and an up-to-date catalogue of Professionals who they can share learning and build collaborations with. The members of ENTYAC present were very happy to contribute to the work of the organisation particularly around meetings and events, developing health services policy, and communications.

Next the stunning, wide-ranging and high-level advocacy in patient and public involvement and engagement work being completed by Youth Cancer Europe with its collaborators was presented by Katie Rizvi. The impact of this work upon cancer research and innovation and policy was very apparent in the delivery of ‘lived experience’ led research, leading to minimum standards for AYA cancer care in Europe. Two soon to be funded projects in AYA cancer (which had Youth Cancer Europe within them) were noted including the Melodic Project, and the next European Youth Cancer Network Project.

Dr Kenny Rodriguez-Wallberg from Stockholm presented her planned research, which is very close to achieving final funding, predicting risk for fertility and other adverse late effects after AYA-onset cancer was presented. There was considerable interest in collaboration with Dr Rodriguez-Wallberg, and linkages were made for that to be achieved, possibly for a joint position paper on fertility care issues between ESMO, SIOP Europe, possibly the European Haematology Association and the PredictAYA consortium.

Dr Ivana Bozovic (Co-chair for ESMO) and Professor Owen Smith (Co-chair for SIOP Europe) presented the respective work of their groups and their collaboration in AYA-onset cancer. The huge volume of work that had been completed by these initiatives (going back for more than a decade in both cases) and the ongoing projects were noted with interest, as was the continued commitment of ESMO and SIOPE to work on AYA cancer, on existing collaborations across adult-paediatric oncology and other issues such as young-onset carcinomas. There was considerable interest in exploring joint projects with ESMO on brain tumours (with EANO perhaps) There was some discussion about the prominent role of younger investigators and leaders in the SIOP Europe AYA Committee, wherein the potential of that to be a useful model more widely.

Next there was a detailed and comprehensive presentation by Katrin Scheinemann, current chair of the PanCare Network on their recent new research project PanCare4AYA, coordinated by Leontien Kremer and Heleen van der Pal and funded by a HORIZON Europe call, on Adolescent and Young Adult cancer (their clinical risk factors for late effects, and clinical management systems to screen for, detect and manage those late effects). The impressive previous work of PanCare on late effects was noted by all present, and how welcome it was that they were moving into Adolescent and Young Adult-onset cancer as part of their remit, while retaining their central focus on Young Childhood-onset cancers. There was considerable interest in the feasibility of extending the work from childhood onset cancers to older patients, with the increased volumes that would need to be managed, and a hope shared that the monitoring programmes proposed would bear that case volume pressure in mind over, which is much greater than that built in for young children.

The existing, remarkable and successful (midway through its funding term) STRONG-AYA project was presented by Simone Hanebaum, Senior Project Manager for this 5-year multidisciplinary Horizon Europe research project. The project’s objectives and structures were noted. STRONG-AYA can see the value of working with ENTYAC, in particular to access AYA clinical staff other than oncologists, such as social workers and nurses, maintaining its sustainability, maintaining its reach, and improving the breadth of data that can be collected prospectively within this project.

Next, the European Haematology Association recent survey on its vision for Adolescent and Young Adult cancer was presented by Dr Anna Castleton from Manchester. This enormous survey, amounting to almost 1,500 European respondents over 45 countries identified multidisciplinary interest in Adolescent and Young Adult issues, inequity and incomplete spread of the broad based services that are necessary to provide care for haematological conditions in Adolescents and Young Adults, both with cancer and with non-malignant haematological conditions. Respondents were interested in trans-national collaborations and programmes, enhancing financial and educational and workplace support for young people living after cancer, and staff training. The next strategic agenda for the European Haematology Association AYA taskforce includes beginning to address those issues and opening a line of work on Adolescents and Young Adults with non-malignant haematological conditions in parallel with their work on haematological malignancies. There was considerable interest in the potential for collaboration between the European Haematological Association work and other professional societies and professional groups, which might be able to be channelled productively through ENTYAC.

ENTYAC thanks the volunteer Chairs, and scribes (Dan Stark, Simone Hanebaum, Giorgia Manuzi, Mariangela Fiorente, Ruth McMenamin, Anna-Elina Rahikainen, Hans Neef, Toni Hunt, Johan De Munter) for the breakout sessions. The 69 people registered to participate in this meeting were able to work in smaller groups of varying sizes, disciplinary and geographical aspects, to understand the full range of AYA specific projects which members of our collaborative network are working upon, in clinical, research, innovation, policy and advocacy areas, some local, some regional, some national and some international. In their breakout group the optimal skill mix and what was available to those projects was discussed, including the roles of psychology, youth work, social work, rehabilitation as well as more traditional methodological, medical and other healthcare professional roles. Those roles around mental health, and around young people’s wellbeing, around social relationships and rehabilitation are perhaps particularly important in teenagers and young adults. The relative lack of commissioned time with methodologists in many of these projects, data science expertise, project management, and even protected funded time for researchers themselves to work in this area was noted. There was considerable interest in bringing forward opportunities to widen participation, opportunities for research funding through Horizon Europe and other sources, in collaboration.

Next, breakout groups worked on projects which might link with others to think about what those linkages might be, across what purposes, and the distinction between work projects have to do alone to deliver their objectives and work they can do in collaboration with others.

The meeting concluded by considering further processes ENTYAC members want, to help us progress the outcomes for Adolescents and Young Adults with cancer further.

• It was felt helpful to generate a password protected catalogue of the stakeholder members of ENTYAC with their areas of interest, and where they wish to share them, their contact details so this can build a community, which can work on these issues together and link individuals where they wish that as a benefit of ENTYAC membership. This linkage needs to be effective, as linking with others requires capacity, but it can achieve a wider engagement in funding opportunities and other similar areas. There was particular interest in how to link at the right level with larger organisations, and using socially orientated technologies, mentorship approaches and twinning to try to enhance shared learning.
• There was a interest in extending the areas of enquiry to palliative care and further into Equity, Diversity and Inclusion, and including an ever wider range of professionals including rehabilitation and sports, and across the quantitative to qualitative spectrum.
• There was considerable interest in planning how to involve young people living with and after cancer in advocacy and patient and public involvement and engagement without overwhelming those individuals, and find the right range of participants with engagement from non-governmental organisations and charities at the heart of the work of ENTYAC in future.
• Professional education and guideline projects were a particular priority, as were late effects and the provision of complete and comprehensive services.
• There was considerable interest and support for the concept of an informal body, interdisciplinary and inclusive, that linked to the large scale projects going on alongside ENTYAC, extending beyond the Horizon Europe Cluster of AYA cancer survivorship projects.
  • this could support them to be strategic in what they did, enable any projects that weren’t thriving to be reenergised and refreshed, bring them closer together and met on a regular basis.

We therefore concluded on specific actions

• of creating a password protected area of the website
• ask the wide range of ENTYAC members to contribute information should they wish to about their interests, skills and contact details to a catalogue so that people can link through the website.
• Involve members of ENTYAC in a wider number of projects such as JANE 2 project, STRONG-AYA, and many others as each of these progress over time.