Page 1

Public consultation on the PE Quality Guidance 2017

1. What group or affiliation best describes you?* [choose one]

❏     Patients

❏     Patient advocates

❏     Patient organisation

❏     Researchers and academia

❏     Pharmaceutical and biotech industry

❏     Healthcare professionals

❏     Policymakers and regulators

❏     Health technology assessment (HTA) agency

❏     Funders or payers

❏     Other - please explain

2. Where are you located? * [drop down list]

●     Please select from the following drop down list.

3. Please let us know how much experience you have in patient engagement*: [choose one]

❏     Advanced: I am actively part of patient engagement projects

❏     Beginner: Currently I have no previous experience, but I am planning to do patient engagement projects within the next year

❏     None: I have no experience in working with patients, but would like to do more

Page 2

Level 1 - PE Quality Guidance (required*)

The PE Quality Guidance is the outcome of extensive work initiated by PFMD and developed in collaboration with 76 professionals, representing 51 organisations active in patient engagement in medicines development. It builds on existing frameworks, guidance, and standards published by or available as of June 2017. This is submitted to a public consultation to ensure all voices can be heard and expectations taken into account moving forward

4. Please read the following statements and choose the option that fits best to your opinion. [Strongly Disagree/ Disagree/ No opinion/ Agree/ Strongly Agree]

●     Overall, the 7 Quality Criteria are useful for achieving qualitative patient engagement practice.

●     The language used to describe the Quality Criteria is comprehensive and easy to understand.

●     The format of the Quality Criteria is clear and easy to understand.

5. I can use the PE Quality Guidance Tool [Strongly Disagree/ Disagree/ No opinion/ Agree/ Strongly Agree]

●     to improve the quality and consistency of my PE activities

●     to better plan and develop my PE activities

●     to better assess the quality and impact of my initiatives

●     to identify gaps and opportunities for patient engagement activities

●     to capture and share learnings beyond the project or project team, throughout my organisation

●     to structure our work together with partnering organisations

6. Would you need help in understanding how to use the guidance?

❏     No

❏     Yes → If yes, please specify what kind of help you would need._____________

7. In the context of your role or your work, it is important to have a practical patient engagement guidance.

❏     Strongly Disagree

❏     Disagree

❏     Not decided/ No opinion

❏     Agree

❏     Strongly Agree

8. In the context of your role or your work, would you use a patient engagement guidance?

❏     Yes

❏     No → If not, why not?_________________

9. Should other stakeholder groups use (a) PE guidance? (e.g. patient association, industry, etc.)

❏     Yes

❏     No → if yes, please specify which ones

10. Do you already use some guidance in your patient engagement work (e.g. internal guidances, or others).

❏     No

❏     Yes → please specify which one ____________

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Level 2 - Detailed feedback for 7 Quality Criteria (optional)

If you have specific comments for the 7 Quality Criteria, please share them here: (suggestions / amendments on the current criteria, structure, language, examples...). These questions are optional.

[If you don't have specific comments for the 7 Quality Criteria, please click "NEXT" at the end of

the page to move on.]

1.    Shared purpose and complementary objectives [textbox]

2.    Respectful and adaptive interactions [textbox]

3.    Responsibility and accountability [textbox]

4.    Representativeness of stakeholders and evidence [textbox]

5.    Capacity and capabilities for meaningful engagement and involvement [textbox]

6.    Documentation and transparency in communication [textbox]

7.    Continuity and sustainability [textbox]

Other feedback: [textbox]

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Almost done..

All responses will be treated anonymously.

However, if you wish to be kept updated on the PE Quality Guidance work, please provide your

email address below. Your contact details will be used only for the purpose of updating you

about the PE Quality Guidance work and will not be given to any third party. You may change

this preference at any time by sending the PFMD team an email to be removed from the update


Please remember to click "DONE" at the end of this page to submit your response!

Please email us at is you have any comments or questions. And feel free

to refer your colleagues and network to this survey!

12. Please choose from the options below if you wish to be kept informed of this work.

❏     Yes, I wish to be kept informed on the results of this survey (optional)

❏     Yes, I wish to be kept informed on the PE Quality Guidance work (optional)

Name and email address:____________________________