The PFMD end of the year Board meeting (25th of October 2018) was held, by a happy and nostalgic coincidence, in the exact same room where the decision to first form PFMD was made in December 2014.

2018 was a big year for patient engagement, for PFMD and our members. It was a year when we strengthened the foundation of patient engagement, expanded the patient engagement ecosystem, built tools and methodology and helped increase the demand for systematic engagement.

The impressive growth of the PFMD membership to 30 members in just three years tells us we are on the right track.  We welcomed five new members this year (Servier, Arthritis Foundation, Sant Juan de Deu Research Foundation, American Migraine Foundation and Sheffield Biomedical Research Centre), launched our SYNaPsE support services for testing, and unveiled the first patient engagement guiding documents – the PFMD Patient Engagement Quality Guidance. A campaign to drive awareness of the Guidance reached almost 2 million people. We’ve also launched the Book of Good Practices, perfectly complementing the other tools.

And that is just the tip of the iceberg. A more in-depth presentation will be delivered with the annual report in early 2019.

The central lesson of our experience to date is that none of us can do anything alone. Here are some of the key projects that will define the next twelve months:

  • From  Patient Engagement Quality Guidance to specific “how to “ modules: Following the publication of the Patient Engagement Quality Guidance and Book of Good Practices, a public consultation to identify the relevant PE activities in each phase of medicines development was conducted. A webinar was held on December 4th to disseminate the results of the public consultation and how it has guided the next steps in the co-creation of the patient engagement framework. The webinar aimed to identify interested stakeholders to join PFMD working groups in 2019 to create the how-to modules that will build on the Patient Engagement Quality Guidance and articulate a methodology for specific activities with patients. 
  • Building the conditions through training: Training for the pharmaceutical industry on patient engagement has been identified as a key activity to build the demand and create the conditions for patient engagement to happen systematically within the industry and across individual organizations.

The solution will be provided on different levels:

  1. Basic and universal: The WHY and values of PE needs to be integrated as part of the “code of conduct” in companies and to be known by all employees.
  2. Medium and semi-customized: More specific knowledge provided to patient-facing teams.
  3. Specific training (for example for companies targeting rare diseases): modules that focus on specific aspects, therapeutic areas, patient populations, research and development phases, etc.  
  • Dedicated contract templates: The recently released Guiding Principles were well received and discussed. The next step is to deliver dedicated contract templates. Find out more here. 
  • Fair Market Value: The contribution of patients and patient experts provides tangible value to other stakeholders and society that should be fairly compensated. Currently, there is no transparent and consistent system for financial compensation in place that reflects the level of individual contribution and expertise. WECAN has already started to address this issue, surveying an extensive number of patients and patient representatives in Europe and beyond. Complementing them, PFMD will launch a questionnaire aimed at completing the picture from the various stakeholder points of view and inform the various projects addressing this issue, starting with the NHC initiative to build a fair market value model and calculator before the end of next year.