EMSP Annual Conference 2018: MS Research: Moving towards a Patient-Centered Approach
More than 120 delegates from more than 20 European countries attended the EMSP Annual Conference 2018, 8-9th June, in Bratislava, Slovakia.
Co-hosted by the Slovakian MS Society, under the theme of MS Research: Moving towards a Patient-Centred Approach, the event gave people the opportunity to learn about the latest developments in the field of MS research, to understand the political and administrative challenges for access to treatments as well as to demonstrating the importance patients’ involvement and perspective in Research. Patient involvement is vital to ensure outcomes are focused on the real lives and needs of people with MS.
1. The role of MS advocates in MS research
Research is vital. With the hope that one day we will find a cure for MS, we keep pushing so MS research is high on the agenda of the scientific community as well as the political agenda.
As a patient platform, it is our work to raise awareness and garner support from politicians. EMSP ally, Kateřina Konečná (MEP from the Czech Republic) reminded us during the Conference there is work to do together to ensure the European and national authorities keep investing in the health systems for people in Europe.
Harriet Doig, Information Advocacy and Research Officer at the MS Society of Ireland shared the experience of the society with her presentation The Role of Patients in shaping up the Research agenda. MS Ireland believes research is the most beneficial way to improve understanding of the disease. It leads to better treatments, interventions, management and we will ultimately find a cure for MS. MS Ireland supports, promotes and funds scientific and social sciences research.
With the help of MS Societies active in Europe, we at EMSP believe we can gather the data needed to understand the needs of people with MS and provide researchers key information to progress their work.
Two educational workshops provided valuable information on Clinical trials and the Health Technology Assessment. These workshops provide knowledge for MS Patient advocates and for the wider MS Community information needed to essential when discussion issues on treatment and the socio-economic impact of MS. With research data, the advocates are reinforced and thus their voice in the relevant fora addressing key decision-makers about the needs and concerns of the community.
2. Bridging the gap between the MS Patient Community and Scientific Community
Professor Alan Thompson presented the latest initiatives in MS research. Collaboration is key to success. EMSP will continue gathering the experts and key stakeholders together and promoting successful partnerships to move the MS Research agenda forward.
The European Committee for Treatment and Research (ECTRIMS) was represented by Professor Tobias Derfuss. A member of the ECTRIMS Executive Committee, Professor Derfuss highlighted the ongoing ECTRIMS-supported MS research programmes and current partnerships. ECTRIMS has partnered with EMSP and other organisations (the European Medicines Agency, the Multiple Sclerosis International Federation and others). ECTRIMS works with researchers and clinicians a worldwide scale, creating networking and collaboration opportunities from member countries and with other organisations that share similar missions and objectives. The goal of ECTRIMS is to improve basic and clinical research and clinical outcomes in MS.
3. EMSP’s involvement in progressing MS research
The N2B-Patch is a project funded by the European Union, bringing together universities, research institutes, small-medium enterprises, industry and patient organisations. This research-project is exploring the possibility of treatments for MS that would bypass the blood-brain barrier.
Bypassing the blood-brain barrier is a tremendous innovation that could lead to more effective ways of treating MS. It has the potential to be a less invasive treatment for patients, avoiding the need for injections and oral medicine. Please check N2B-Patch video too!
This project has received funding from the European Union’s Horizon 2020 research and innovation Programme under grant agreement No. 721098.
The DO-IT project is 2-year project, funded through the Innovative Medicines Initiative (IMI) of the EU. The overall goal of the Big Data for Better Outcomes (BD4BO) programme is to facilitate the use of big data. Big data is data sets that are so voluminous and complex that traditional data-processing application software are inadequate to deal with them) to promote the development of value-based, outcomes-focused healthcare systems in Europe.
Using our extensive experience on MS registry projects, EMSP represents the patients’ perspective on how to share healthcare data on the value of including patient centred outcomes (PCO) and the development of an appropriate informed-consent template for clinical trials. In addition, EMSP supports the communication and dissemination of the project outcomes.
The project results are expected for the end of 2018.
This project has received funding from the Innovative Medicines Initiative 2 Joint Undertaking under grant agreement No 116055. This Joint Undertaking receives support from the European Union’s Horizon 2020 research and innovation programme and EFPIA.
4. Newly-elected EMSP Young Person’s Representative
This was a very competitive election. Following many rounds, Patrick Puljic from Croatia was successful and received most votes. He takes over from the brilliant activist Jana Hlacova from Czech Republic. Here is his vision for the role and for young people with MS in Europe:
“I am standing for election because I already have some experience in advocating for people with MS. Not only does it help me understand MS better, but I also want to protect young people with MS and their rights. I represent the idea that the decision-making in health care has to be done by the people living with MS and that these people could help in achieving an easier and better life.
I believe this position can make positive change in Croatia. With this position in the EMSP Executive Committee we can show other young people that there is an opportunity in dealing with MS and they can find answers not only in their national MS association but also in the local MS Society. Not only is this a good opportunity for me and the local society, but also for the national society. I hope we can prove we are ready for big things.”
The Secretariat and Executive Committee look forward to working with Patrick to achieve our goals for young people with MS in Europe.
5. Just Do It! People with MS
Before this Spring Conference, we asked people with MS to apply to take to the stage and share their experiences in the MS community.
Joanna La Rosa from Malta, Michelle Reid from the United Kingdom and Panagiotis Milothridis from Greece spoke powerfully about their careers, diversity, life with MS and their ambitions. EMSP is immensely grateful for their willingness to present to the audience and to show the real-life impact of MS.
6. Launch of EMSP Annual Report 2017
Following the EMSP Annual General Meeting on the 7th June, we launched our Annual Report 2017.
The event was co-hosted by the Slovakian MS Society and supported by our Corporate Sponsors: Actelion, Almirall, Biogen, Celgene, MedDay, Merck, Novartis, Roche and Sanofi Genzyme.