Patient Organization Award
Winner: MS Australia
MS Australia has demonstrated its commitment to strategically and purposefully implementing the MS Brain Health recommendations, being one of the first patient advocacy organisations to endorse the consensus report. We continue to have two Australian representatives on the MS Brain Health Steering Committee and are the first chapter that formed a local MS Brain Health group to promote the implementation of MS Brain Health recommendations, hosted and administratively supported by MS Australia.
Our commitment has translated in a high awareness and ongoing participation in national and international projects1. The initiative is embedded in our planning and resource allocation, guides our advocacy activities, research grant allocations and publications - all are focused on improving the quality of life of people with MS.
1 The recent 2020 global impact survey (see https://www.msbrainhealth.org/about-us/our-impact/) confirmed Australia as the third highest (14%) participating country.
Italian Multiple Sclerosis Society and its Foundation
The Brain Health Center of the Rockies
Patient Advocate Award
Winner: Nele Handwerker, Germany
MS-Perspektive is a German podcast for patients and their relatives to educate them and provide a positive mindset. It includes three main pillars and is based on the recommendations of the “Brain Health Report”:
- My experiences from 18 years living with MS in terms of therapy, diagnostics, lifestyle, family and working life and keep on being a happy person. And continuously explaining and repeating that a brain healthy lifestyle is the best approach for every patient.
- Interviews with experts on individual topics such as research, the latest therapeutic approaches, and importance of diagnostics.
- Interviews with patients to show the variety from RRMS freshly diagnosed to some years down the road, to SPMS and PPMS, presenting their perspective and providing tips on how they have overcome low points.
With 130 episodes available, weekly publishing and >57,000 downloads it has become the most important show in German language.
Kathryn Keefer, USA
Elizabeth Kinder, UK
Winner: Torbay and South Devon NHS Foundation Trust, UK
A one monthly clinic was established to provide an educational experience for all new patients diagnosed with MS, around 30 new patients a year in our catchment area (approximately 286,000 people). This included an interactive session from the MS neurologist regarding the nature of MS and management and a retired GP living with MS on how lifestyle changes can be of benefit to people with MS brain health.
The aim was to empower the newly diagnosed and to allow people with MS to meet and share experiences and focus on how to preserve brain health.
The pandemic required adjustment of this clinic to be the main focus with interactive discussions online, followed by time for individual patients to see the Neurologist one to one if needed online. We have also developed the Connect plus app where all information about healthy living is stored in one place for further more detailed reference.
Haukeland University Hospital, Norway
Italian Multiple Sclerosis Society and its Foundation – Rehabilitation Research Area
Winner: Jodi Haartsen, Australia
Jodi has dedicated her entire career to helping people living with MS have the best possible life. She has helped thousands of patients over her 20 years at Eastern Health MS service in Australia, in several roles including nurse educator, research nurse and nurse practitioner. More recently, in 2020, Jodi became Executive Manager for Client Engagement and Wellbeing at Multiple Sclerosis Limited where she uses her vast knowledge and experience to improve MS services through a focus on brain health.
Dr Darshpreet Kaur, Bihar Neuro, India
Dr Ruth Ann Marrie, University of Manitoba, Canada
Winner: MS in the 21st Century, Lumanity on behalf of Merck KGaA
'MS in the 21st Century' began as neurologist-led initiative in 2011, sponsored by Merck, aimed at tackling unmet needs in MS. People with MS (PwMS), so instrumental in understanding these unmet needs, were added in 2016 and together MS21 worked to develop resources for both communities. The fundamental premise of their partnership is that better communication and aligned priorities are essential to empowering PwMS to realise truly shared care – two monologues do not make a dialogue.
After gathering evidence around the need for improved communication between PwMS and healthcare professionals (HCPs), they developed four communication tools for PwMS and their care teams. Supported by a learning programme, the 'myMS toolkit' is used globally and integrated into practice, patient association and community programmes.
The longer-term goal is to measure impact in a controlled trial. In the meantime, metrics and awards show myMS tools are addressing a key unmet need in MS.