The Engagement Coordination Team (ECT) is a critical component of the PROMS Initiative’s participatory governance framework. The PROMS Initiative recognizes the importance of engaging patients in the research and care continuum and has established an innovative framework to facilitate this engagement. Within this framework, patient advocacy organizations play a vital role as boundary organizations between science and society, and are instrumental in defining and implementing effective patient engagement practices.
To support the PROMS Initiative, the ECT was established, consisting of people affected by Multiple Sclerosis (MS). The ECT serves to integrate the unique experience of living with MS into the initiative, ensuring that the perspectives and needs of people living with MS are effectively represented. By having people living with MS involved in the ECT, the PROMS Initiative is able to benefit from their experiential knowledge, which is then brought to the initiative’s working groups.
The PROMS Initiative is a multi-stakeholder initiative, bringing together over 60 organizations worldwide and several scientific and advocacy experts. The initiative is rooted in an open and participatory governance structure, ensuring that all stakeholders have a voice in shaping its direction and priorities. The ECT plays a key role in this structure, ensuring that the perspectives and needs of people living with MS are effectively represented.
Asociación de Esclerosis Múltiple de Bizkaia (ADEMBI)
Laura Belscott
ECT member
UK MS Society
Former members:
Susanna van Tonder
ECT member
ADEM
Michael G. Thor
ECT member
lVersus Arthritis
Marni Hall
ECT member
IQVIA
Joanna D. Skrzypczak
ECT member
Centrum DREWS
Guy Peryer
ECT member
University of East Anglia
PwMS Engagement Coordination Team has been established following the patient engagement guidance set by MULTI-ACT, a project funded by the European Union to increase the impact of brain research. As part of their work, the team utilizes the methodology and toolset developed by MULTI-ACT to ensure the active engagement of people affected by MS throughout the research continuum.
MULTI-ACT project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 787570.
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