MULTI-ACT at EHMA 2020
- an abstract session on the theme ‘Personalisation’, and
- a panel discussion on ‘Patients in the driver’s seat! Co-research on patient-driven innovations’.
EHMA 2020 was the 25th annual conference of EHMA, this year on ‘Health management: realigning systems, contexts and players’. The Conference took place digitally through the lens of Rotterdam on 17-19 November 2020, gathering over 350 participants including representatives of academia, research, healthcare professionals, health and hospital managers, and policy and decision makers.
During the abstract session, Professor Giancarlo Comi, President of the European Charcot Foundation, presented the MULTI-ACT framework and how it is applied to the Multiple Sclerosis (MS) Care Unit Initiative to maximise and evaluate the impact of health research, with specific emphasis on those outcomes that matter to patients (science with and of patients input).
‘The MS Care Unit Initiative is a patient-centered initiative that aims to provide the highest possible leading-edge interdisciplinary care model for people with and affected by MS, while advancing research to prove its cost effectiveness for the society (sustainability)’.
In addition, the MULTI-ACT project was presented in the session ‘Patients in the driver’s seat! Co-research on patient-driven innovations’ hosted by the Karolinska Institutet.
The session highlighted findings and learning from a partnership research program on the implementation of patient-driven innovations. The program’s contribution lies in approaching health care innovations from the perspective of the patients and builds on a collaboration between researchers, patients, their informal caregivers and health care providers.
The opening presentation by Dr. Maria Reinius, Researcher at the Department of Learning, Informatics, Management and Ethics at Karolinska Institutet, provided an overview of the research programme followed by findings from a scoping review on patient-driven innovations. Then, the session featured a panel discussion with Dr. Mathieu Boudes, Coordinator of the PARADIGM project and Dr. Paola Zaratin, Director of Scientific Research at the Italian MS Society and Coordinator of the MULTI-ACT project, who shared their views on their respective projects, both aimed at meaningful patients engagement in research.
During this session, Dr. Zaratin presented the intent of the MULTI-ACT project, described the Collective Research Impact Framework and the tools within the framework, highlighted some driving factors of effective patient engagement, as well as exchanged with other speakers on their projects and the upscaling of those efforts for better patient engagement in research innovations.