As part of the effort to co-create a meta-framework for patient engagement, PFMD organized 3 workshops with 45 international participants representing patients/ patient organisations, industry (including. CRO and biotech), independent experts (with backgrounds from academia, research and also industry), HTA and regulatory.  Each workshop was designed to focus on a specific phase of medicines development and lifecycle and participants were specifically selected based on what they could bring to the table. We now have an open and engaged community of taskforces with specific actions to drive co-creation.

For each of the working groups we have invited representatives of different stakeholder groups, including people with specific expertise in the development phase discussed:

  • Working Group 1: Discovery and Preclinical
  • Working Group 2: Phase II, Phase III clinical studies and Regulatory
  • Working Group 3: Phase IV clinical studies and life-cycle management (including safety and compliance to medicine and patient solutions).

Click here to see all the working groups participants.

The Mapping and Networking Tool provided a great Who’s Who repository for identifying and connecting with key individuals to participate in the workshops. We also reached out to our 21- member organisations and wider networks to get the representation we needed for each working group. In each of the groups, we have seen a high level of commitment and willingness to contribute to framework co-creation.  

Working Groups 1 and 2 were held in November 2016. A concrete action plan was generated and specific learnings from these were used for the final Working Group (3) which took place in February 2017.

Taskforces are being created to take on the prioritised action points from all working groups. The action points range from co-creation of practical guidance in all phases of medicines development to an engagement plan to get all relevant stakeholders involved in the co-creation process. PFMD initiated two task forces in January:

  • The Compliance & Legal Hurdles task force will tackle the barriers to meaningful patient engagement by analysing real life examples, standard operating procedures and contracts. The result will be a recommendation to change this first step to involve patients and to offer practical templates that industry can work with.
  • The Patient Engagement Guidance Book  task force will collect and analyse existing practices to create an evaluation grid for health sciences industry and other stakeholders to identify good practices relevant for them to implement.

Learnings and criteria identified will be looped back in the mapping tool to help collect further structured information and keep sharing and updating knowledge about PE. More details about outputs of these working groups will be communicated in upcoming editions of #MadewithPatients

Do you want to contribute? Contact Chi Pakarinen for more info.