Join the European Patient Advocacy Groups (ePAGs)

EURORDIS wants patient organisations to participate in European Reference Network (ERN) decision-making processes and is supporting its membership to ensure a democratic process of patient representation.

For this reason, EURORDIS has developed a European Patient Advocacy Group (ePAG) for each ERN disease grouping. ePAGs will bring together elected patient advocates and affiliated organisations who will ensure that the patient voice is heard throughout the ERN development process.

It is important that patient advocates and clinicians evolve how they work together in the new system of ERNs. EURORDIS will continue to support patient advocates in developing this approach and in ensuring that they shape the development of ePAGs.

Membership of ePAGs

Membership of ePAGs is open to all rare disease patient organisations (EURORDIS members and non-members based in the European Union). ePAGs can only benefit from the flow of ideas between a range of member organisations and advocates.

To register the interest of your patient organisation in becoming an ePAG member organisation please fill out this form indicating which ERN you wish to be affiliated to.

ePAG patient advocates

As of January 2018, there are over 255 ePAG patient advocates to represent the wider patient community in the development of ERNs. ePAG patient advocates have an official permanent mandate to represent ePAG member organisations. They liaise with these organisations to ensure true and equitable representation of the patient voice by participating in the Board and sub-clinical committees of their respective ERN.

The recruitment of these advocates is ongoing to ensure that patients are fully represented in the governance of each and every ERN. Patient advocates have already been elected to numerous ERNs but additional applications are welcome for all networks. Members and non-members of EURORDIS are encouraged to apply. If you are interested in becoming an ePAG advocate please contact lenja.wiehe@eurordis.org.

ePAG patient advocates must come from a patient organisation in the EU. ePAG advocates are members in their respective ERN Boards. The role and function of ePAG patient advocates will be agreed with the ERN Network Coordinating Lead.

ePAG advocates must adhere to the EURORDIS Charter of Volunteers. The number of patient advocates per ePAG is determined in collaboration with clinical coordinating teams of ERN applications and according to the scope of the respective ePAG membership.

ePAG Constitution and Rules of Procedure

ePAG Constitution and Rules of Procedure have been developed in consultation with EURORDIS members and ePAG Steering Committee members outlining the governance structure and working procedures of ePAGs. The Terms of Reference will be reviewed and revised to reflect the needs of ERNs.

In addition, a document describing the process for establishing ePAGs has been developed.

ePAG Capacity-Building Programme

The European Patient Advocacy Groups (ePAGs) were set up by EURORDIS to ensure the patient voice is present in the development of the European Reference Networks (ERNs).

EURORDIS runs a capacity-building programme for the over 200 ePAG advocates, with a focus on three levels:

ePAG advocates who voice the views of their ePAG’s wider membership to their respective ERN Board;
ePAG advocates involved in ERN topic groups; and
All 200+ ePAG advocates who are involved in the 24 ERNs.

For more information please contact lenja.wiehe@eurordis.org.

ePAG Good Practices

Peer-to-peer learning is a powerful resource to drive change and showcase how patient involvement in ERNs is delivering results. These fact sheets and webinars have been developed by ePAG patient advocates to guide others through their own experience, identifying success factors and lessons learned.

Good practice: Patient involvement in identifying unmet needs on clinical patient guidelines

Charissa Frank, Ilaria Galetti, Ana Vieira, ePAG patient advocates ERN ReCONNET (European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases)

Fact sheet

Presentation

Recording of webinar explaining good practice

Good practice: Raising awareness of ERNs at the national level

Dorica Dan, ePAG patient advocate ERN-ITHACA (ERN on congenital malformations & rare intellectual disability)

Fact sheet

Presentation

Recording of webinar explaining good practice

Good practice: Developing patient journeys

Sue Routledge, Ammi Sundqvist Andersson, ePAG patient advocates ERN-ITHACA (ERN on congenital malformations & rare intellectual disability)

Fact sheet

Presentation

Recording of webinar explaining good practice

Good Practice: Rare eye disease ontology creation and editing

Russell Wheeler, ePAG patient advocate ERN EYE (European Reference Network on Rare Eye Diseases)

Fact sheet

Recording of webinar explaining good practice

The role of ePAGS

Specifically, ePAGs and ePAG advocates:

Contribute to the ERN Board to provide the perspective of patients on all relevant aspects of the ERN strategy, policy & organisational processes
Promote and encourage a patient-centric approach in both delivery of clinical care, service improvement and strategic development & decision-making
Advocate for care that is patient-centred and respectful of patients’ rights and choice
Provide the patient perspective on the application of personal data rules, compliance of information consent & management of complaints
Ensure that processes to address all ethical issues and concerns for patients are in place, balancing patient and clinical needs appropriately
Advise on transparency in quality of care, safety standards, clinical outcomes & treatment options
Advise on overall planning, assessment and evaluation of ERN activities and initiatives
Monitor the performance of the ERN by reviewing quality indicators such as clinical outcomes of diagnosis and treatment
Develop an ePAG feedback and evaluation framework across all ERNs to provide patient experience feedback of ERN and healthcare providers’ activities
Monitor and evaluate the adoption of patient feedback by the ERN based on patient experience surveys prioritising the objectives, work plan and service improvement in the network on an annual basis
Contribute to the development and dissemination of patient information, policy, good practice, care pathways and guidelines
Contribute to research e.g. defining research areas important to patients and their families and disseminating research-related information
Identify expert centres to join the ERN as a full member or affiliated partner
Provide an evidence-based patient perspective on the needs of people living with a rare disease and ensure all rare diseases are considered and included in ERN discussions and activities
Produce annual ERN evaluation reports