MULTI-ACT Patient Engagement Group (PEG) Kick-off meeting
The first MULTI-ACT Patient Engagement Group (PEG) meeting took place in light of the 2018 MSIF (Multiple Sclerosis International Federation) World Conference in Rome.
This working group brought together a wide representation of expertise on patient engagement across geographical areas, diseases, health domain and topics.
Stakeholder engagement is an essential characteristic of the strategy of the MULTI-ACT project. The main goal of patient engagement activities is that patients become partners — key stakeholders — in the process of co-creation within Health Responsible Research and Innovation. To reach this goal, one of the key activities that MULTI-ACT is carrying out is the collection and analysis of existing patient engagement initiatives in health research and innovation processes, which will then be used by the consortium to detect gaps and barriers preventing the performing and funding research organizations from doing effective patient engagement. On the basis of such analysis, the consortium wants to formulate a series of recommendations which will be included in a set of guidelines for practitioners and a white paper for policy makers.
This first MULTI-ACT Patient Engagement Group (PEG) meeting brought together a dedicated panel of experts in charge to operatively work in all activities related to patient engagement in order to facilitate this process. The internal expertise is primarily represented by partners with expertise focus on management of health, diseases and patients. In particular FISM, ARSEP representing people with MS, EBC representing different brain diseases and link with related patients and EHMA bringing their experience on supporting institutions in innovating health management practices and processes.
The external PE members are: Timothy Coetzee, the chief advocacy, services and research officer at the National Multiple Sclerosis Society (NMMS) in New York, USA; Paola Mosconi, Mario Negri Institute, Laboratory of Medical Research and Consumer Involvement, Lars Kluver Managing Director of The Danish Board of Technology Foundation and Engage2020 project coordinator, Paola Kruger expert patient of the EUPATI project and Federica Balzani representing the Italian MS Society Foundiation (AISM, FISM) in the Executive Committee of the European MS Platform (EMSP).
This kick-off meeting was the first opportunity for the entire PEG to meet and to build and agree on concepts instrumental to the methodology as well as to co-design the patient engagement mapping methodology and connected tools. Next steps will be the start of the literature review and web search to collect information on existing patient engagement initiatives.