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Call for action: As patients and HCP’s please give your input on patient information leaflets (PIL) and medicine guides

your input will help us understand the needs, challenges and expectations regarding this important information, co-create tools to increase patient involvement in the development of patient information leaflets

Two surveys to understand the need, usage and usefulness of patient information leaflets (PIL) and package leaflets/ inserts

The PFMD Working Group that focuses in the post-launch phase is working on a detailed How-to guide to all stakeholders to do more systematic patient engagement. This How-to guide will address patient engagement in the co-creation of patient information leaflets and other supportive information for patients.

The aim of this How-to guide is to improve patient facing material that can truly support patients with accessing and understanding treatment information.


Help us by sharing your insights as a member of the patient/ carer community or as a healthcare professional through a dedicated survey. See the link to surveys below.


Understanding patients’ challenges, needs and preferences for medicine product leaflets.

Understanding healthcare professionals needs and challenges when discussing patient information leaflets with patients.


Concretely, your input will help us understand the needs, challenges and expectations regarding this important information, co-create tools to increase patient involvement in the development of patient information leaflets, promotion of best examples, recommend formats and avenues for dissemination, language consideration and ultimately improving health literacy and access to information regarding medicines prescribed.

Attached below are one-pager invitations (for each survey) for more information that you can also share with your network.

The surveys will close on October 18th.

Thank you!
On behalf of the Working Group and PFMD team