ERN PaedCan General Assembly: 25 September 2018, Brussels
Around 80 participants took part in the ERN PaedCan General Assembly on 25 September in Brussels. Various stakeholders provided an update, details on the implementation plan, project performance quality indicators, and the deliverables for Year 2. Participants were engaged in interactive discussions.
An update of the ERNs key achievements to date was provided and included the following:
- 24 Networks started their clinical work with patients
- Increasing numbers of patient cases discussed virtually
- Consolidation and implementation of the governance structure and networking capacity
- Development of training, education and awareness actions
- Implementation of clinical patient guidelines (CPG)
- Development of research projects including registries
In terms of the ERN System, the Board of MS and the ERN Coordinators are developing common administrative and clinical strategies, guidelines and procedures. The integrated working groups are working on knowledge creation, research, and ERN integration into the national healthcare systems, continuous monitoring and quality improvement, ethics and IT platforms. The challenges for the ERNs system were discussed in detail. These include assessing the changes required in the policy and legal frameworks of each member; developing patient pathways; deciding how a patient case is referred to an ERN; effective support at Hospital level; long term sustainability (financial & organisational); developing a framework for ERNs’ research activities and use CPMS as the platform for data collection & registries.
It was reiterated that clinical guidelines and patient pathways are the cornerstone of the ERNs. There are ongoing activities to support ERNs in the development of Clinical Practice Guidelines.
A summary of the various phases of the ERN lifecycle was given. ERN PaedCan is currently in the implementation / deployment stage, which includes the establishment, initial organisation phase, functioning of the initial actions / services and partial service production. The next two years (2019-2020) will comprise of the consolidation phase including the full service production, continuous monitoring as well as initial outcome assessment using performance indicators.
Key achievements of the Clinical Patient Management System (CPMS), which was launched in November 2017, included improvement of the CPMS functionalities. In fact, a European Data Protection Supervisor gave a positive opinion on the CPMS. Key objectives for 2019 will involve ensuring that the full CPMS rollout by clearing national data protection issues and local technical issues. Another key objective is to tailor the CPMS data set for the specific needs of ERNs.
Furthermore, an update on ERN PaedCan activities and achievements followed starting with highlights of the vision, mission, key benefit and the aims of the roadmap, which are summarised below:
- Healthcare cooperation and resolving expert fragmentation
- Identifying special therapeutic needs of young people with cancer requiring high expertise interventions with ECTG (special surgery, radiotherapy (proton therapy), stem cell transplants )
- Identifying European institution ready to engage as reference centres by establishing and/or rolling out virtual tumour boards for cross border advice
- Identifying European Institutions / hospitals offering top level expertise for special therapeutic interventions and referrals
- Visibility and Integration of PO National Parent and Survivor Organisations
It was emphasised once again that the ERN PeadCan contributes to other EU projects such as PARTNER, TREL 1 & 2, and EJP European Joint Programme on Rare Diseases and the Joint Action on Rare Cancers (JARC). Various Twinning Programmes (i.e. TREL Project) are aiming to strengthen a specific field of research by linking it with at least two internationally-leading research institutions to support training exchange of healthcare professionals.
Other presentations included:
- EUPID: Current integration and how the various European data systems could fit together.
- Survivorship Passport: Launched in Italy on February 2018 and how has started receiving positive feedback. A detailed update will be provided at the next general assembly.
- PARTNER Rare Disease Registries: The objectives, structure, outcomes and deliverables of the project.
- The European Commission’s Platform on rare diseases registration: An explanation on why, the benefits and the solution. The European Rare Disease Registry Infrastructure provides the infrastructure and tools to make registries’ data searchable, findable, interoperable and reusable (FAIR principle).
- Austrian Survivorship Passport implementation: Overview of the aim such as support for better healthcare pathways, leveraging the existing eHealth Infrastructure and the activities.
- PanCare: Survivorship plans, projects and overview of guidelines. New EU-funded project ‘PanCareFollowUp: Novel, patient-centred survivorship care to improve care quality, effectiveness, cost-effectiveness and accessibility for survivors and caregivers’ (Grant agreement 824982) was also mentioned.
- CCI-Europe: Update on the current situation and the survivors’ network in Europe.
- Information systems for ERNs: An overview of all the platforms that have been released so far, those that are in development and out of scope.
Additionally, participants were reminded that the Call for new ERN Members will be expected in Q1 and Q2 in 2019. There is a need for ERN PaedCan to foster wisely HCP integration in Call 2 but decision-making processes will remain national! Most importantly there will be a call for affiliated members and for full members. Once calls are open, ERN PaedCan will inform its community accordingly.
There were some nice moments such as when key participants made the following memorable comments:
- Enrique Terol, DG Santé: “#ERN is like having 24 children…”
- Ruth Ladenstein: “We have to show patients where to go when they need help”.
Once again, participants shared the view that ERN PaedCan will help to increase childhood cancer survival and quality of life in the long term by fostering cooperation, research, training and knowledge sharing to end professional isolation, with the ultimate goal of reducing current inequalities in childhood cancer survival and healthcare capabilities across Europe.
Browse photos from the past two meetings here.