Assessing Patient Partnership Implementation in the ERNs
Patient Partnership in the European Reference Networks (ERNs) can be defined as a mutual relationship between people living with a rare disease (PLWRD) and health professionals involved in an ERN where input from PLWRD routinely and formally informs the Network’s collaborative activities and decision-making[1].
To understand the impact and continuously improve Patient Partnership in each individual ERN, it is crucial to assess its implementation regularly. To support ERNs in this process, EURORDIS has adapted two questionnaires developed at McMaster University in Canada to assess patient and public engagement in a wide range of health system organisation settings[2][3].
The questionnaires can be used by ERNs to monitor progress, and identify strengths as well as areas of improvement in the implementation of patient partnership. By analysing and discussing the results, patient representatives, healthcare professionals involved in the Network, and ERN staff can co-create a roadmap for continuous improvement based on shared insights.
Questionnaires for Assessing Patient Partnership in the ERNs
Questionnaire for ERN patient representatives (ePAG)
This questionnaire collects feedback from ePAG advocates on their involvement in the ERN, providing insights into key features of their partnership with health professionals.
- Duration: Approximately 20 minutes.
- Format: 20 or 21 statements and questions.
- Recommendation: ePAG advocates are encouraged to use a simple system to capture on a regular basis their activities in the ERN. This will allow faster completion of this annual survey faster. You may use for this purpose the “My impact as an ePAG advocate” notebook or any other system.
Download templates in Word format (ePAG) or download and import to your EU survey dashboad.
Questionnaire for ERN leadership team
This questionnaire evaluates how patient partnership is integrated across various aspects of the ERN’s work. It is intended for the ERN Coordinating team, clinical leads, ePAG representatives who Chair or Co-Chair ERN Working Groups, and ERN Board members.
- Duration: Approximately 5 minutes.
- Format: 16 statements and questions.
- Recommendation: Adapt the target audience to the governance structure of each ERN.
Download templates in Word format (ERN leadership) or download and import to your EU survey dashboard.
How to administer the questionnaires
The ERN Coordination team would be responsible for distributing the questionnaires, collecting the data, analysing the responses, and organising a reflection session with patient representatives, health professionals, and ERN staff to discuss the results and agree on follow-up actions.
It is suggested to administer the surveys once a year, for example at the time where the ERN monitoring indicators are collected, or every two years. There are 4 key steps to help the ERN coordination team administer these two questionnaires.
Step 1: Prepare
The ERN Coordination team uses the downloadable template’s documents with the questions & questionnaire logic to create two online questionnaires. The ERN Coordination team will be responsible for storing the responses.
ERNs may wish to adapt the questionnaires to reflect the unique features of their Network. However, we discourage the removal or complete re-wording of questions as this could limit comparability within individual ERNs if the questionnaires are being used repeatedly to assess changes over time.
Step 2: Circulate
The ERN Coordination team circulates the questionnaires once a year, for example at the time where the ERN monitoring indicators are collected, or every two years. The two questionnaires complement each other; both evaluate the implementation of patient partnership from a different perspective, so it is recommended to use both of them together.
Step 3: Analyse
The ERN Coordination team analyses the results from both questionnaires, prepares a report with the main findings and results, and shares it with the ERN leadership team (clinical leads and ePAG advocates who are Chairs or Co-Chairs of ERN Working Groups & ERN Board members) and with the ePAG.
Step 4: Discuss and agree on follow-up actions
The ERN Coordination team organises a reflection session where patient representatives and clinicians involved in the ERN can discuss the results, provide mutual feedback on their collaboration and agree on follow-up actions to improve their partnership. You may use the checklist in the Annex II of this short guide to prepare the session.
Share this initiative in your Network!
You can use the following resources to communicate about this system to assess Patient Partnership in your ERN:
- Assessing Patient Partnership Implementation in the ERNs – Factsheet
- Assessing Patient Partnership Implementation in the ERNs – Short guide
Explore more resources on patient partnership in our Patient Partnership Hub.
Contact: pem-epags@eurordis.org.
[1] Patient Partnership framework for the ERNs https://www.eurordis.org/publications/patient-partnership-framework-for-erns/
[2] Abelson J, PPEET Research-Practice Collaborative. The Public and Patient Engagement Evaluation Tool. https://ppe.mcmaster.ca/resources/public-and-patient-engagement-evaluation-tool/
[3] Abelson J, Tripp L, Kandasamy S, Burrows K; on behalf of the PPEET Implementation Study Advisory Committee. Supporting the evaluation of public and patient engagement in health system organizations: Results from an implementation research study. Health Expect. 2019; 22: 1132–1143. https://doi.org/10.1111/hex.12949