Leader of the PARADIGM consortium Mathieu Boudes from the European Patients’ Forum (EPF) and Senior Director, Patient Engagement at GlaxoSmithKline, Kay Warner outline the genesis of the PARADIGM tool they led the co-creation of: “Recommendations on how to find the right match for the right patient engagement activity”Read More
What happens in patient engagement when everyone is not on the same page? Elisa Ferrer and Maria Cavaller of Eurordis describe how they devised tools for the management of competing interests and conflicts of interestRead More
The lack of a transparent and consistent system in place for financial compensation that reflects the level of individual contribution and expertise of patient partners is finally being addressed, heard the Patient Engagement (PE) Open ForumRead More
Developing appropriate policies for compensating patients, patient organizations, and family members for patient-engagement activities have been a hot topic for those involved in patient engagement in recent years.Read More
Mathieu Boudes – (EPF) PARADIGM Coordinator
One year. This is the time that remains for PARADIGM to have a tangible impact on the patient engagement in medicines R&D ecosystem. All the workstreams, as well as all our partners, are fully involved as we seek to deliver what will make a difference. The phase of aiming to understand and prioritize the gaps in patient engagement practices and the process will end soon, allowing the new phase to begin, that of developing the necessary tools to systematise patient engagement. Meanwhile, all the other elements of this significant project are converging to deliver the Monitoring and Evaluation Framework on time and by the end of the year.Read More
Is measuring the impact of patient engagement activities in medicines R&D, a way to sustain the cultural change for more systematic and meaningful patient engagement? We asked this question during a session at the DIA Global Annual Meeting 2019 in San Diego earlier this summer
Author: Mathieu Boudes, European Patients’ Forum and PARADIGM CoordinatorRead More
PARADIGM is proud to announce a partnership with Global CardioVascular Clinical Trialists (CVCT), a community of cardiovascular clinical trialists. They will join the PARADIGM International Liaison Group (PILG), an information hub acting as an operational platform to connect PARADIGM with key IMI and other international engagement initiatives in co-development and promote the implementation of patient engagement practices.Read More
An interactive workshop bringing together over 30 representatives from industry, patient organisations and academia was held to test, apply and develop a monitoring and evaluation framework for patient engagement. Read More
In March 2019, a workshop was organised to validate the final draft of the “Recommendations on the required capabilities by all stakeholders to implement patient engagement” before launching the wider consultation and to perform a trial consultation. The group of 37 participants also sought to agree on concrete plans in the areas identified as gaps where the material for facilitating patients engagement is needed.Read More
By Dr Stuart Faulkner, Programme and Operations manager, Nuffield Department of Primary Health Sciences, Oxford University, UK
Patient engagement (PE) and patient and public involvement (PPI) before, during and after the research process can help develop research questions, methods and outcomes that respond better to the needs and interests of patients, carers compared to when researchers alone in isolation. Furthermore, researchers can benefit by producing research that is more relevant and impactful.
By Nathalie Moll, Director General, European Federation of Pharmaceutical Industries and Associations (EFPIA)
At EFPIA, we work across a wide spectrum of topics from prevention and awareness, through research and development (R&D), regulatory and Health Technology Assessment (HTA) processes, managing relationships, to developing healthcare service design and outcomes measurement. Each one has a direct impact on the lives of patients, their families and carers across Europe.
By Jean Georges, Executive Director, Alzheimer Europe
Dementia affects around nine million people in Europe. Despite many efforts, no treatment exists to date which could cure, prevent or slow down its progression. Globally, and at European level, a lot of research is being conducted which is helping to better understand what causes dementia, the risk factors, its progression, how to cope and live better with the condition and to develop more effective treatments and care options.