On September 6th 2018, four European patient organisations (European Patients’ Forum (EPF), European AIDS Treatment Group (EATG), EURORDIS-Rare Diseases Europe and Alzheimer Europe and a research foundation (Fondation Sant Joan de Déu) organised a webinar on patient engagement on medicines research and development. The webinar was attended by more than 100 interested people, many of them patient representatives.
The webinar highlighted the important shift in the way patients are perceived, the great value of engaging them in the development of medicines and the diversity of methods and ways in which such engagement could happen. All presentations tapped into the topic of capacity building activities (e.g. training and education), which could empower patients to meaningfully engage in the process of developing medicines. More specifically, EURORDIS-Rare Diseases Europe presented the work they have been carrying out, illustrating the different possibilities for the patient community to engage with regulators, while HTA.EATG showcased the engagement with industry through the European Community Advisory Board example.
The webinar also highlighted the need to consider and address the preferences and needs of patients who may have more specific needs and who have been traditionally excluded from participation. The situation of people living with dementia and children and young people served as an example of these patient groups, and the way in which they have worked in this area.
You can check the recording of the webinar here.
You can download the presentations here.
Introduction to the Patient Engagement webinar series
Nicola Bedlington, EPF
The PARADIGM Project
Mathieu Boudes, PARADIGM Coordinator
What Patient Engagement is and how it should look like
Engaging with industry. The ECAB example
Giulio Maria Corbelli, EATG
How to engage with EMA and HTA
Elisa Ferrer, EURORDIS
Patient engagement in the case of potentially vulnerable populations
The case of people with dementia
Ana Diaz, Alzheimer Europe
The case of children and young people
Begonya Nafria, Sant Joan de Déu
Chaired by Koen Block, EATG
The webinar is organised by four European patient organisations and a research foundation. To know more about these organisations please visit:
European Patients Forum (EPF): www.eu-patient.eu
European AIDS Treatment Group (EATG): www.eatg.org
European Organisation for Rare Diseases (EURORDIS): www.eurordis.org
Alzheimer Europe: www.alzheimer-europe.org
Sant Joan de Déu Barcelona (SJD): www.sjdhospitalbarcelona.org
This webinar series is supported by PARADIGM (www.imi-paradigm.eu)