Patient Engagement for Medicines Development in a nutshell

The Book of Good Practices

Collecting good practice examples in patient engagement was set as a priority in the co-creation working groups organised by PFMD to kick off the framework building process.

Patient engagement  stakeholders agreed that access to real examples was lacking. They saw it as a source of inspiration for the new work they are planning and give them the chance to assess ongoing or  finalised projects . Having access to robust examples of others was helping make their work more impactful.

PFMD made it clear from the start that the Book of Good Practices will work in non-competitive space and examples will be anonymised.

How did PFMD operated the first selection ?  

Examples were identified from Synapse,  a robust and unique repository of what has been delivered in patient engagement. Priority was set to select work that involve multiple stakeholders, has been innovative in their approach and have substantial data generated at the end.


A robust methodological approach to select and evaluate?      

After a first step of selecting the examples , the Quality Guidance tool was used to evaluate and score the various initiatives . Multiple stakeholders in patient engagement (industry, patient associations, researchers, academics) have been enrolled to evaluate and score independently the quality of the examples.

A short list of examples exemplifying Best Practices in Patient Engagement is available.

More examples will follow. This will nurture a so-called Book of Good Practices helping end-user to select best examples per development phase of medicine,  quality criteria and type of activity.