The ePAG Impact Assessment Framework has been developed by the ePAG Steering Committee and EURORDIS with the following objectives:

  1. Develop together a clear understanding of the ePAG advocates role and the objectives for their involvement in the ERNs (learning and focus)
  2. Identify the key activities that will help progress towards the identified objectives (learning and focus)
  3. Explain the value of ePAG advocates involvement in the ERNs and provide measures to assess the impact of this involvement overtime (accountability)

The ePAG Steering Committee members identified 3 main objectives that drive their involvement in the Networks: 1) to improve quality of care, diagnosis and treatment of rare diseases 2) to ensure that ERNs meet the patient community needs and 3) to ensure a good level of awareness among the patient community about ERNs and their work.

10 measures were developed to assess the extent in which the ePAG advocates were contributing to these objectives with their activities (see table below). Due to the lack of resources and time, it was not possible to engage extensively with the clinicians in the development of these measures, but some ePAG advocates managed to engage with their ERN Coordinator and project manager to get their feedback and suggestions.

Currently 3 ePAGs are piloting the framework (ITHACA, ReConnet and RITA). The pilot is being led by the ePAG advocates in each group with the support of EURORDIS and it will run from May 2020 until December 2020. In addition to the 10 measures, each ePAG will draft an accompanying report describing their involvement and impact in the ERN meetings and calls.

Num. Measures
Goal 1: Improve quality of care, diagnosis and treatment 1 Listed as co-authors of  consensus statements and Clinical Practice Guidelines
Goal 2: Ensure patient-centric ERNs that meet our community needs – Needs of patient community inform all ERN activities and  their structure (for example, ERN covering in equal terms adult and paediatric care, MDT, etc) 2 Percentage of ERN WGs with ePAG advocates participating as members
3 Patient representatives are members of the ERN Registry governance structure and/or ERN Registry Working Group (Yes/No)
4.1 Number of patient journeys or surveys to capture patients’ needs that have been discussed with ERN clinicians
4.2 Percentage of sub-thematic areas where patient needs have been captured through a Patient Journey (or a survey on patients’) and results have been discussed with ERN clinicians
5 Perceptions or level of satisfaction on how ePAG advocates and clinicians are working together as a team to advance the ERN goals
6 Percentage of outcome measures identified with the input of ePAG advocates
7 Number of posters/presentations on ERNs delivered in national or international meetings (conferences and workshops)
Goal 3. Ensure a good level of awareness among the patient community about ERNs and their work (so that all can benefit) 8.1 Perception on how the ePAG has organised the outreach to its wider patient community (DISSEMINATION)
8.2 Perception on how the ePAG has organised the outreach to its wider patient community (CAPTURING FEEDBACK AND PATIENTS NEEDS)