Governance: Patient representatives are represented in VASCERN governance as well as in the European Patient Advocacy Group (ePAG), which is expected to participate actively and give patients’ and families’ views. ePAG representatives represent patient organisations across Europe and will mainstream information to maximise the interactions between the ERN and patient organisations.
The European Patient Advocacy Group (ePAG) will implement its own road map as there are common issues to be tackled and shared; inform the Board and Council of difficulties they see and be involved in Ethical issues, to balance patient and clinical needs appropriately.
Care: Promote, encourage a patient-centric approach in clinical care, service improvement, strategic development, decision-making, ensure the need of rare disease patients are considered and included in discussions and activities, Contribute to the development and dissemination of information to patients, from policy to good practices, care pathways and guidelines.
Research: Contribute to define research priority based on what is important to patients and families, ensure patients are embedded in the research activities, assessment of clinical trials and ethics committees, contribute to dissemination of research activities and outcomes, especially to patients
Evaluation: Ensure feedback, evaluation based on patient experience, reviewing the ERN performance by receiving and reviewing quality indicators, access times to diagnostic and treatment, clinical outcomes, evaluation of how the ERN acts based on these feedbacks, through the ePAG, patient experience surveys, in order to redefine and prioritise ERN activities. To give as much information as possible to patients, a social forum should be established on the website. Patients should be aware of what should/should not be done for appropriate diagnosis and care.
As Expert patients, they are best placed to educate patients and families on the management of their diseases. They can identify and recommend expert centres or other HCPs.