Piloting the Patient Engagement Quality Guidance for continuous improvement
Be part of the first global initiative of standardising qualitative patient engagement
Are you interested in improving the way patient engagement happens today within your organisation and globally? Join the global piloting efforts of the PFMD Patient Engagement Quality Guidance and help improve its usability and impact”
What does piloting the Patient Engagement Quality Guidance mean practically?
Agreement on the importance of patient engagement in medicines development is more or less common across the healthcare ecosystem. But we are still far from agreeing on how to define qualitative patient engagement.
Last year the Patient Engagement Quality Guidance was launched, with a very positive response from the community. It is a practical guide to planning, developing and assessing the quality of patient engagement activities and projects throughout the development and lifecycle of medicines.
By becoming a part of this piloting process you will have the chance to give feedback, contribute and further define this Quality Guidance.
This is a critical milestone to pursuit the ambition of providing instructions and guidelines that are comprehensive to the majority of stakeholders committed to deliver excellence in patient engagement activities.
Who should pilot?
This piloting initiative is open to anyone interested in testing the Patient Engagement Quality Guidance within a patient engagement initiative. You will be able to provide your feedback and help improve its usability and impact to all stakeholders.
If you are involved in or run initiatives where multiple stakeholders are involved, this is for you!
You are eligible if
- You want to use a quality guidance in planning, managing or assessing a patient engagement activity
- Your patient engagement initiatives involves multiple stakeholders (especially patients, or patient organisations)
- You are motivated to shape the future of patient engagement in the medicines development lifecycle
How does it work
The process:
Register for independent piloting.
We will ask for your consent to use the feedback from your piloting experience to analyse and communicate the results during the entire piloting period.
Use the provided feedback forms to
Use the provided feedback forms to improve the usability and impact of the guidance.
You can always come back to this page to find all the forms.
Example on when and how to use the feedback forms:
Initiative in planning stage (PEQG template scenario 1)
A patient organisation and pharma company collaborate to co-create a patient leaflet. The project has not started yet. In this case, either or both stakeholders can lead the project and make sure that relevant assessment for the quality of patient engagement is done in requested timepoints.
- The Patient Engagement Quality Guidance (scenario 1) is introduced to the project partners in the first planning meeting and is filled out by both partners together. Each partner will complete the relevant feedback form individually online.
- Project will be assessed in the interim and at the end with the same method with template scenario 2 and relevant feedback forms.
Feedback forms to complete per project type
Quick access – feedback forms
| For initiatives in the planning process | First evaluation form | Interim evaluation form | Final evaluation form |
|---|---|---|---|
| For ongoing initiatives | First evaluation form | Interim evaluation form (if relevant) |
Final evaluation form |
| For finalised initiatives | Retrospective evaluation form |
Timeline
Now – June 2019
Piloting can start any time between now and the end of June 2019 but will need to have the final assessment (regardless of the initiative timeline) by end of September 2019
September 2019 – End of initiative
This means that your initiative can be on going already and can end after 2019, but we will capture your assessment by end of September 2019
Feedback is requested from your piloting experience at different timepoints depending on your initiative timeline, as following:
| Beginning of the piloting process | Interim (midway through the project) | End/ retrospective | |
|---|---|---|---|
| Ongoing initiatives and initiatives in the planning | |||
| Completed initiatives |
| Ongoing initiatives and initiatives in the planning | Completed initiatives | |
|---|---|---|
| Beginning of the piloting process | ||
| Interim (midway through the project) | ||
| End/ retrospective |
Support and feedback
PFMD.org has all needed background information of how the PE Quality Guidance was born, who was involved and what are the next steps in the work stream. For examples of patient engagement initiatives please check out SYNaPsE Mapping and Networking tool.
If you experience difficulties and do not know how to proceed, please let us know by sending us an email to pfmd@thesynergist.org