29 January 2019
Strengthening Patient Voices in Europe
Meningitis patient advocacy groups have created inspiring change throughout Europe over the years: improving access to fast-effective treatment, raising awareness of signs and symptoms, and supporting patients and their loved ones. Such groups have demonstrated great strength and dedication to their causes, even though they often receive minimal funding and rely on the work of volunteers. And yet the work they do is vital and there is still so much to be done to defeat meningitis.
With this in mind, CoMO and the Meningitis Research Foundation (MRF) have developed the Strengthening Patient Voices project. This project will strengthen meningitis patient groups across Europe to help them build upon their existing work and successes. The project is set to run for three years with three patient groups: Bekæmp Meningitis (Denmark), Nederlandse Meningitis Stichting (Netherlands) and Asociación Española contra la Meningitis (Spain). These groups have the critical task of bridging the gap between patient and policy by addressing the needs of patients and their families affected by or at risk of meningitis.
This exciting pilot project was launched in May 2018, and since then the participating organisations have been reflecting on their work, their current reach and goals. MRF and CoMO are now working on the delivery of workshops to provide a space for the patient groups to discuss their strategies, barriers, and key learning points, allowing for invaluable knowledge sharing. MRF and CoMO have been involved in advocacy work around meningitis for decades now, placing them in a prime position to enable such discussions.
The project will enable the groups involved to create a stronger, united voice but to also ensure their strategies and activities are specifically tailored to meet the demands of their settings.
When asked about why he decided to join the Strengthening Patient Voices project and what he hopes to gain, the Chairman of Bekæmp Meningitis had this to say:
“As a newly started organisation we are very excited and grateful to have been included in the Strengthening Patient Voices project. Our participation provides us with an invaluable opportunity to establish a solid foundation with clear vision, mission, strategy, goals and advocacy plans that would otherwise be beyond our resources and abilities.”
While it is still early days, MRF and CoMO hope that this project can be replicated and applied in other geographical contexts. With strengthened patient groups around the world we’ll be better prepared to fight and coordinate against the challenges of prevention, diagnosis and treatment, as well as ensuring there is effective information and support. And there are many challenges: limited surveillance on the scope of meningitis, increasing antimicrobial resistance, insufficient vaccine uptake, to name a few.
Meningitis can have a devastating impact on people and their families and amplifying the voices of people who have experienced this first-hand ensures that we are being sensitive to the needs of patients, survivors and their loved ones.
Sam Nye, Executive director of CoMO said:
“CoMO exists to bring together patient groups from around the world and create a united voice. By strengthening the voices of individual patient groups and building their national influence, this project ensures that pressure for change comes both from the top down and from the bottom up.”
Vinny Smith, Chief Executive at MRF said:
“We have learned over many years of successful advocacy campaigns the true value of the patient voice, combined with a strong evidence-base. We are delighted to be able to use our expertise in this project to ensure that the disease is given the attention it deserves internationally to create a world free from meningitis.
Nadia oversees all communications channels, plans events, and provides general support within CoMO's Head Office. Please contact Nadia with any enquiries relating to communications and events.