Consultation for The Patient - OLD - Patient Focused Medicines Development

Public Consultation for
The Patient Engagement Catalogue

Take the survey to help us validate all relevant patient engagement activities in the medicine development and lifecycle.

Thank you for your interest. The survey is closed now. Stay tuned for the conclusions. 

By participating in this public consultation you will help answer the pressing question of what specific patient engagement activities should or could be done in each phase of the medicines development process.

+ Click for background information

Your contribution to validating these activities will help us build the most comprehensive list of patient engagement activities for each of the phases in medicine development continuum.

This Patient Engagement Catalogue will help enrich the Patient Engagement Quality Guidance, bringing a concrete & practical approach to patient engagement, and defining the need for additional guidances in specific circumstances of activities.

Who should participate:


Research funders

Policymakers or Regulators

Patient Representatives, Patients Organisations or Caregivers

Healthcare professionals

Health Technology Assessment (HTA) bodies

Research & Academia representatives

Pharmaceutical/ Biotechnology/ Medical Technology (devices) industry representatives

Payers (insurers or other organisations paying for healthcare)

How does it work

This survey is built in sections for each of the medicines development phase:

In the beginning of each section you will be asked to clarify if you have previous experience or expertise in that specific phase. If you don’t have any experience or expertise, you can choose to skip that section and move on to the next.

In each section, we will ask you to do three things:

1. Read a list of patient
engagement activities
identified and validate whether you agree that these activities belong in this phase.

2. Identify if there are gaps or patient engagement activities that could be done in this phase but are not listed there.

3. And finally, tell us if some activities in this phase would also fit in another phase.

You may save the survey at any point and continue later if needed.

How long does it take?

Each phase will take roughly 6-10 minutes to complete and the whole survey will take approximately 30 minutes to complete. However, we do not expect you to have expertise in all phases of medicines development and thus the irrelevant phases can be skipped.

Questions or comments?

Please send an email to

Contact us

Background information

Based on our landscape analysis and multi-stakeholder discussions, we have identified a need to have a broad list of all activities that can be done with patients in the medicines research, development and lifecycle. This would encompass all PE activities from the early discovery until delivery of medicine and potentially beyond.

To meet this need, PFMD has reviewed over 20 guidances, frameworks, recommendations and other publications during 2017 to create a preliminary list of over 150 PE activities. This original list has been cleaned and structured in this survey and now we need your help.