Patient Engagement for Medicines Development in a nutshell

Discover inspiring patient engagement initiatives

The Book of Good Practices is a selection of patient engagement initiatives that can be considered good practices. The selection used a methodology based on the Patient Engagement Quality Guidance.

The rationale

Lack of common agreement 

There is a lack of common agreement about what is a Best Practice in patient engagement.

Patient engagement work

There is a high demand and urgent need to have access to examples demonstrating quality and impact of patient engagement work.

Guidance for newcomers

There is a need for examples offering guidance, as well as as a benchmarking basis for newcomers in patient engagement

Mobilisation is crucial

The mobilisation of the patient engagement community interested to share their work in a non competitive and anonymised space is crucial. We invite you to contribute to the next edition of the “Book of Good Practices” and  join the next wave of selection process.

Contact us for more information

The methodology

Step 1:  Build a collection of good examples

via SYNAPSE. An in depth screening was performed in 2 waves (Jan 2017 – Sept 2017) and examples were identified using the following criteria:

  • Activities specific to patient engagement work in the development phases of medicines
  • Multiple stakeholders involved in the project
  • Exhaustive description of work (methodology and impact / outcomes).

From a total of 170 initiatives, 40 have been selected.

via Global PFMD Network. Participants in the PFMD working groups as well as PFMD members shared their cases during 3 working sessions, covering Europe and North America.

Step 2: Select best practices

The global PFMD Network participants select the best practices. The following criteria defines the eligibility to the Book of Good Practices:

  • The initiative is extensively described by their owner using the template provided in the Patient Engagement Quality Guidance.  
  • The initiative is focusing efforts on involving patients in the decision process of the development of medicine phases or life cycle management
  • The initiative has involved multiple stakeholders groups
  • The  initiative has measurable outputs
  • The Patient Engagement Quality Criteria and guiding questions have been put into practice and helped to identify impactful results.
  • The initiative has operated in a robust legal environment
  • The owners/ organisation agreed to be featured in the Book of Good Practice and approved final content for public dissemination.
  • Initiatives have been anonymised. Some editing to the original description  of the examples was provided to make the example more easily comprehensive by all.

Step 3: Evaluate and rank the best practices

To ensure the multi stakeholder perspective was guaranteed when evaluating the examples, a Core team was created with representatives accumulating multiple backgrounds, expertise and experience in patient engagement.

The adoption and extensive description of the majority of the 7 criteria of the Patient Engagement Quality Guidance in the pre-selected initiatives has been critical for the evaluation and ultimately the ranking of the examples.

This evaluation process was anonymised, from the individual assessment of the Core team members until the ranking of the initiatives to be integrating in the Book of Good Practices.

Mobilisation is crucial

The mobilisation of the patient engagement community interested to share their work in a non competitive and anonymised space is crucial. We invite you to contribute to the next edition of the “Book of Good Practices” and  join the next wave of selection process.

Contact us for more information
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