Click on the title of any of the projects below to read more about it.
- A best practice in the area of access to treatment, service and support:
What is MS21?
MS21 is a Merck KGaA, Darmstadt, Germany-sponsored initiative that aims to gain real-world, actionable insights into unmet needs in the management of multiple sclerosis (MS), from the perspective of both healthcare professionals (HCPs) and people living with MS (PwMS).
It is a medical-led, non-promotional and non-product specific initiative.
MS21 produce resources and educational materials that are free and available to healthcare professionals and people living with MS across the globe.
Where and when it was rolled out?
MS21 first began in 2011 as a group of international MS healthcare experts aiming to standardise care worldwide. Recognising the importance of including the patient voice, MS patients were invited to join the group in 2016.
In 2021, MS21 are celebrating their 10 year anniversary since inception, and currently have 29 regular advisors (17 healthcare professionals and 12 people living with MS) representing diverse experiences, demographics and geographies.
The initiatives are created at a global level but implemented regionally and adapted to meet local needs.
A summary of the initiative:
In MS care and management, good communication is essential. Recent research shows that poor communication could lead to unsatisfactory consultations, a lack of understanding, and a breakdown of trust between people with MS and their healthcare teams and poorer outcomes
The primary objectives of MS21 include improving communication between HCPs and PwMS through working together to generate insights and evidence, and then develop practical educational resources for all stakeholders based on real-world unmet needs and data.
An example of the assets MS21 have produced, which are free and available for HCPs and PwMS to download are:
- Educational resources – MS21 Website: to provide support and education on MS and management options, including a COVID ‘FAQs’video, an interactive resource with responses from our specialists
- Communication tools – A series of practical consultation and care planning tools and e-learning modules under the ‘myMS’ banner for HCPs, PwMS and carers
- Publications – 7 patient-HCP co-authored, peer-reviewed publications and 14 patient-HCP co-authored conference posters: MS in the 21st Century
- Congress communications– Meeting booth materials that showcase outputs, focusing on key insights and creating a portal to engage with content and resources, as well as presentations, workshops and symposia focussing on current MS21 themes
- Digital surveys –There are currently 3 live surveys investigating the impact of cognition on employment, communication about MS progression, and the role of families and caregivers in shared decision-making.
- Podcasts –In collaboration with Jon Strum and the ‘Real Talk MS’ podcast, MS21 has coordinated episodes covering patient-provider communication, caregiver involvement, and communication challenges associated with MS progression.
The global website can be found here: https://msinthe21stcentury.com/en
A best practice in the area of patient empowerment:
What is the ADHD Women Project?
The ADHD Women Project is offering Patient Empowerment: Empowering women living with a neurological conditions to engage more effectively in shared decision-making. The initiative project started in early 2020 with thanks to EFNA #BrainLifeGoals grant awarded to us. Two patient organisations joined forces from Belgium and Germany (ADHD, ASC and LD Belgium and ADHS Deutschland e.V) to begin raising Awareness about un/diagnosed in ADHD in Women.
Our initiative is still empowering girls and women worldwide. Our dissemination efforts are educating society to understand more about ADHD in their lives, especially for women, families, carers to learn more about symptoms, challenges, strengths and strategies to have a better quality of life.
A summary of the initiative
Across Europe and globally girls/women were ignored in ADHD research having no available literature. Prior screening-tools omitted factors for diagnosis in girls (puberty, hormones, inattentive type etc). Girls experienced a lifetime of struggles growing up, becoming adult women.
Women unknowingly had symptoms. We raise awareness by:
- Disseminating information via social-media platforms
- Updating our website (German-English)
- Uploading the experiences of women with un/diagnosed ADHD
- Starting free online-support groups
- Hosting webinars Sleep, Hormones and Health Insights by experts
Hoping our efforts will lead to policy changes across Europe to make it easier to access diagnosis and treatment.
- To motivate and collaborate on European level with MEPs to support non-profit ADHD organisations.
- Our ADHD voices heard.
Why should women live with a sense of inadequacy, guilt, shame, low self-esteem, anxiety, suicidal ideation, stigma, discrimination of this non-visible condition?
A best practice in the area of stigma, discrimination and isolation:
(Young)people with ME symptoms suffer from extreme fatigue. Many can’t participate in normal social life or go to school. This leads to isolation, discrimination and stigma of being lazy.
Via our tool Illornotill.org they find out whether they might have ME/CFS to get help from their GP.
We team them up with healthy peers. Together they do a community service internship. The healthy ones do the physical work, and the ill ones do other corresponding work, like fundraising. Therefore, we give them proper training. So, they also Iearn a trade for later.
Teaming up healthy young people with sick peers takes the sick ones out of isolation and shows the healthy ones that their peers with ME are also normal youngsters. This fights discrimination and stigma and shows that ME patients have a meaningful contribution to society.
This initiative can be replicated elsewhere. It does take some effort in fundraising and organization. But it is rewarding to make a difference in the life of a young person.
Related link: https://helping-heroes.nl/mecvs/social-challenge/
A best practice in the area of access to treatment, service and support:
The EFIC Plain Talking health literacy campaign is the theme of the EFIC President’s three-year term, and was launched in September 2020.
Health literacy is a person’s ability to access, understand and use information in ways which promote and maintain good health. It is key when it comes to making health decisions and for improving health outcomes. The World Health Organisation consider health literacy as a global public health issue. It is particularly important for people living with pain to help them understand and actively manage their health.
The campaign, titled ‘Plain Talking’ is targeted at both clinicians and people living with pain. Over the next three years, the Health Literacy Working Group will increase awareness about the concept and impact of limited health literacy. It will also focus on improving communication between people living with pain and clinicians by developing a series of materials and useful resources for all, including videos, infographics and brochures, among others.
People living with pain have a right to understand their condition and clinicians should communicate this in a clear and comprehensible way by adjusting their language to meet the person’s needs. This leads to improved knowledge and empowerment for the person living with pain and their capacity to actively engage in a meaningful way with their clinician.
A multiprofessional working group is currently rolling out The Plain Talking campaign. A survey to establish the impact of health literacy on people living with pain was developed, translated into 14 European languages and disseminated; the results of which were discussed in a focus group workshop with patient organisations. A number of resources are now being planned in different media for both people living with pain and health care professionals. To date an infographic has been developed explaining what Health Literacy is. All further resources will be published when available and translated into several languages.
Visit europeanpainfederation.eu/efic-plain-talking/ for more.
On World Parkinson’s Day – April 11th 2021 – and with the aim of raising awareness about Parkinson’s disease (PD), the Spanish Parkinson’s Federation (FEP) and its local Parkinson’s associations launched the campaign called “#TagOnAPositiveLabel”.
The campaign shared highly powerful messages by people with Parkinson’s, as protagonists of the spot and posters, which reached more than 600.000 people and became a national trending topic. 55 local Parkinson’s associations joined the campaign at a local and regional level all over Spain.
In the context of COVID-19 pandemic, FEP ran the entire campaign in an online format and focused a large proportion of the effort on audiovisual materials and actions through social networks, like Facebook, Twitter and Instagram.
This best practice focused on how a non-real social image of Parkinson’s disease can affect people living with the disease, and highlights the importance of taking care of the emotional and psychological health.
“#TagOnAPositiveLabel” pursued the main goal of fighting the stigma about Parkinson’s and promoting an appropriate approach of the condition by the society, media and decision makers. In order to so, FEP shooted a spot with people with Parkinson’s as protagonists. It can be watched here with English subtitles.
Through the dissemination of the spot and promotional posters featuring people with Parkinson’s, the campaign intended to reflect a real and positive image of people with Parkinson’s to encourage their empowerment and social inclusion. The materials show empowered women and men with PD proud of themselves and living a healthy relationship with their condition. They can be downloaded in English here.
Finally, FEP organised an institutional event that was broadcast in streaming were this best practice was offically launched to decision makers, stakeholders, funder partners, people living with PD and local associations. It can be watched in Spanish here.
The webpage can be visited here: https://diamundialdelparkinson.org/