When? May 12th between 9am and noon

Where? Online

Registration here: https://cutt.ly/6tJ7g5B 

Europe is facing significant healthcare challenges due to an ageing population, increased prevalence of chronic disease and multi-morbidities.

In the past, industry, academia, healthcare professionals, regulators, and patient organisations have largely worked in silos. In practice, many decisions about patients’ care, medical research, health information and service design were taken without meaningful patient engagement.

But this is starting to change. The value of collaboration with patients and patient organisations across the lifecycle of medicine is being increasingly recognized.

There are several initiatives at the European level, which aim to identify the needs around patient engagement and strive to address them through collaboration, educational programmes, and co-creation of tools, processes and guidance documents.

The Innovative Medicines Initiative funded-project PARADIGM is currently developing tools aiming to make patient engagement in medicines R&D easier for all. Supported by the Association of Innovative Pharmaceutical Manufacturers (AIPM), the European Federation of Pharmaceutical Industries and Associations (EFPIA) and the European Patient Forum (EPF), these stakeholders would like to bring the conversation to the Central and Eastern European region. Our aspiration is to spark interest in improving patient engagement practices across the region and to be the first of many events that specifically address this topic for the benefit of patients and healthcare systems.

The PARADIGM consortium recognized that for the tools to have a global impact, the insights coming from regions where the patient engagement landscape is less mature are very much needed. Therefore, PARADIGM will organise 3 parallel workshops online, aiming to provide the opportunity for participants to give feedback and shape the thinking about the patient engagement tools that PARADIGM is working on in order to support sustainable patient engagement across the board.

These workshops are to be held in the framework of the “From Gaps to Bridges: The Future of Patient Engagement in Central and Eastern Europe” conference that has been postponed due to the recent COVID-19 outbreak -initially planned for May 11-12th. The live conference is to be held at a later date, which will be communicated as the circumstances allow. 

The workshops will focus on three topics. Expected outputs are specific amendments or recommendations to the IMI PARADIGM deliverables and the consolidated findings will be presented at the Patient Engagement Open Forum 2020:  

Workshop #1: The development of the roadmap to making the patient engagement ecosystem sustainable

Moderated by Stuart Faulkner (University of Oxford) and Bryan Teixeira (EATG)

Objectives of the workshop

  • Stress test the current roadmap and identify additional intermediate goals relevant from the CEE perspective that can support the end goals and vision. 
  • SMARTify the new intermediate goals relevant from the CEE perspective 

Expected outcomes

  • Improved CEE-relevance of current intermediate goals and identification and refinement of 3-4 additional intermediate goals that can support the end goals and vision.
  • Identify CEE-relevant activities applicable to the identified intermediate goals

Workshop #2: The recommendations on the capacity and capabilities to make patient engagement a greater reality

Moderated by Elisa Ferrer (EURORDIS-Rare Diseases Europe) and Ana Diaz (Alzheimer Europe)

Objectives of the workshop

  • Stress test the current capability framework and how that is relevant from the CEE perspective 
  • Identify additional recommendations on the required capabilities for PE relevant for the CEE region

Expected outcomes

  • Improve the relevance of the current capability framework including additional recommendations meaningful for the CEE region

Workshop #3: The development of the monitoring and evaluation framework to assess the value of patient engagement activities

Moderated by Tjerk Jan Schuitmaker (VU-Amsterdam Athena Institute) and Paul Robinson (MSD)

Objectives of the workshop

  • Stress test the current framework with sets of metrics to determine the value of patient engagement
  • Enrich the co-developed framework with metrics that capture value from the CEE perspective

Expected outcomes

  • Improve the meaningfulness and feasibility of the monitoring and evaluation framework for the CEE region
  • Participants are supported in developing a coherent evaluation approach

Please register here https://cutt.ly/6tJ7g5B if you are based in one of the CEE countries and that you are interested in the research and development of medicines.