European Multiple Sclerosis Platform Anne Winslow EMSP President

European Multiple Sclerosis Platform Anne Winslow, EMSP President 1

EMSP The European Multiple Sclerosis Platform (EMSP) is the umbrella organisation of the main national MS Societies in 36 European countries* and represents more than 700. 000 people with MS and 1. 5 million people daily affected by MS (such as family and other care givers). * Austria, Belarus, Belgium, Bosnia-Herzegovina, Bulgaria, Croatia, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Luxembourg, Malta, Moldavia, Netherlands, Norway, Poland, Portugal, Romania, Russia, Serbia, Slovakia, Slovenia, Spain, Sweden, Turkey, Switzerland, UK. 2 2

What is EMSP’s mission? A world without MS ADVOCACY KNOWLEDGE and EXPERTISE RESEARCH • Ensure the voice and influence of people with MS is recognised • Share and promote evidence-based best practice • Campaign for equitable access to high quality treatment, services and employment across Europe • Foster effective cooperation between people affected by MS, health professionals, policy decision-makers and researchers • Encourage and support high quality MS research and international MS research collaboration • Support the collection, pooling and interrogation of essential MS data across Europe Improving the quality of life of more than 700, 000 people with MS across Europe EMSP has 41 members from 36 European countries Best practice European Code of Good Practice in MS Defeating MS Together 3

Flagship projects Ø European MS Barometer Ø Believe and Achieve / Paving the Path to Ø Ø 4 Participation European Code of Good Practice EURe. MS MS Nurse Pro Under Pressure

MS Barometer A benchmarking tool Objective: to obtain an accurate picture of the situation for people with MS across Europe (via responses from clinicians and patient organisations to key questions about obstacles and barriers faced by people with MS in Europe). 1. 2. 3. 4. 5. 6. 7. 5 7 Areas: Access to treatment and care Research Education, Employment and job retention Involvement and Empowerment of people with MS Reimbursement of costs related to MS Data collection at national level Medicines coming to the market 5

MS Barometer 2013 - overall results Austria Belarus Belgium Croatia Czech Republic Denmark Estonia Finland France Germany Greece Iceland Ireland Italy Norway Poland Portugal Romania Russia Serbia Slovakia Spain Sweden Switzerland UK 250 226 187 200 186 158 97 170 158 152 143 137 114 100 191 180 162 155 141 150 188 184 114 109 108 113 98 98 83 50 Au 6 K U st r Be ia la r Be us lg iu m C ze Cr ch oa R tia ep u D blic en m a Es rk to n Fi ia nl an Fr d a G nce er m an G y re ec Ic e el an Ire d la nd Ita N ly or w a Po y la Po nd rtu R gal om an i R a us si a Se rb Sl ia ov ak ia Sp a Sw in Sw ed itz en er la nd 0

Access to treatment and therapies Section 1: access to treatments and therapies Austria Belarus Belgium Croatia Czech Republic Denmark Estonia Finland France Germany Greece Iceland Ireland Italy Norway Poland Portugal Romania Russia Serbia Slovakia Spain Sweden Switzerland UK 100 67 58 50 8 69 45 68 67 25 54 22 44 34 48 37 63 50 63 57 58 Austr. . . Belar. . . Belgi. . . Croat. . . Czec. . . Den. . . Esto. . . Finla. . . Fran. . . Germ. . . Gree. . . Icela. . . Ireland Italy Norw. . . Pola. . . Portu. . . Rom. . . Russia Serbia Slova. . . Spain Swed. . . Switz. . . UK 0 48 53 51 45 58 60 7

Practical uses of the Barometer • • At European level Obtaining an accurate picture of the situation for people with MS across Europe and providing comparable data Monitoring implementation of the European Code of Good Practice Identification of Best Practice between countries with similar socioeconomic situations. • 8 At national level: High-level National Roundtables (Greece, Poland, Russia) Identification of aspects of the condition which are well-managed and areas where administrations need to improve their policies and practices 8

Involvement and empowerment of people with MS Section 4: Involvement and empowerment of people with MS Belarus Belgium Croatia Czech Republic Denmark Estonia Finland France Germany Greece Iceland Ireland Italy Norway Poland Portugal Romania Russia Serbia Slovakia Spain Sweden Switzerland UK 28 23 18 21 11 13 8 28 10 15 15 23 19 10 23 28 18 10 0 Ita ly or w a Po y la Po nd rtu R ga om l an R ia us si Se a r Sl bia ov ak ia Sp Sw ain Sw ed itz en er la nd U K Au 9 28 25 10 8 N 5 33 st Be ria la Be rus lg iu C C m ze ro ch ati R a e D pu. . en. m a Es rk to n Fi ia nl an Fr d a G nce er m an G y re ec Ic e el an Ire d la nd 35 30 25 20 15 10 5 0 Austria

Empowerment of people with MS How to improve empowerment? ü Encourage representation of people with MS in consultative political bodies ü Initiate and promote selfmanagement course 10 10

Education, employment and job retention Section 3: Education, employment and job retention 11 Belgium Croatia Czech Republic Denmark Estonia Finland France Germany Greece Iceland Ireland Italy Norway Poland Portugal Romania Russia Serbia Slovakia Spain Sweden Switzerland 44 Switzerl. . . Sweden Spain 29 31 24 Slovakia Serbia Russia 24 35 35 34 Romania Poland Norway Italy 32 30 Portugal 34 Ireland Greece 38 52 47 Iceland 55 Germany France 43 40 Finland Denmark Estonia 34 28 Czech R. . . Croatia Belgium Belarus 51 41 UK Belarus UK 53 41 38 34 Austria 60 50 40 30 20 10 0 Austria

Improving access to employment Addressing all stakeholders: 12 • Believe & Achieve training programme for young people • Paving the Path to participation project (co-funded by the European Commission) : development of a European Employers’ Charter and a toolkit for the employers • Ready to work project – in collaboration with the Work Foundation and Novartis

Current situation 13

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Practical Steps Employment Policies Recruitment Equal opportunities and proactive employment Training and awareness in the workforce The Working Environment Due process Monitoring 15

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What do we want to achieve? A Believe and Achieve intern – Anna from Italy – shares her first impressions of the project: https: //youtu. be/mq. VESo. W 6 nlc 17

Defeating MS Together • Current issues facing people with MS, and those who care for them, and clear calls to action aimed at improving their lives and reducing inequalities. • Detailed Consensus Statements developed on key areas to provide best practice advice for the care and treatment of people with MS. 18

EMSP Strategic Plan 2015 - 2020 • Five priorities 1. Access to treatment, therapies, rehabilitation and services 2. Employment, job retention and education 3. Understanding Paediatric MS 4. MS research 5. Empowerment of MS carers EMSP will work collaboratively with its members, its industry partners and the scientific community to move forward this agenda 19 19

European Register for Multiple Sclerosis (EURe. MS) 2012 EURe. MS Data Mask A common dataset extractable from the existing registers in Europe that can be utilized to address research questions with ” a European dimension” across the 4 main areas of interest 2013 Define the Areas of EURe. MS research: 1. 2. 3. 4. 20 Epidemiology (Epi); Pharmacoepidemiology (DMD); Patient Reported Outcomes (PRO); Socio Economic Studies (SES). 20

EURe. MS 2011 - 2016 1. MS epidemiological and clinical surveillance across European countries, including the assessment of the ‘MS burden’ in Europe 2. Assessment of long-term efficacy, safety and cost-effectiveness of MS disease modifying and symptomatic treatments across European countries 3. Assessment of provision and quality of health care services across European countries, and 4. Assessment of Pw. MS’ quality of life, the burden of symptoms and socio-economic aspects from the patient’s perspective across European countries 21

EURe. MS: Achievements • Collaborative and geographically representative Network of MS data providers in Europe • Inspiration for creation of new national registries already in Poland, Czech Republic, Switzerland the UK • Validated procedures and methodology for temporary MS data merging; • IT infrastructure for pooling and analysis of (pooled) MS data at UMG; • Ethical and legal framework for central MS data analysis on the base of temporary cross border data pooling. 22

IN DISCUSSION: European Network of MS registries to develop ”SINGLE EUROPEAN PLATFORM FOR PATIENT RELEVANT OUTCOMES” 23 • Medical data alone being derived from traditional clinical trials are no longer regarded as “golden standard”, because there are not mirroring “real life” conditions, they are too expensive because the trials are too long and they rarely reflect on patient relevant outcomes • Both clinical research and patient advocacy is longing for stronger real life evidence • Patient Reported and Patient Relevant Outcome Data are expected to grow into a major role as second criteria for future regulatory and pricing & reimbursement decisions as supplement to the traditional clinical data from registries and clinical trials. 23

MS Nurse PROfessional First and Only European CME-Accredited MS Nurse Online Training Curriculum 24 • A foundation course, available in six languages – English, Spanish, German, Czech, Italian and Polish and with more on the way in 2015 • A modular, online training curriculum to support the evolving role of European MS Nurses • Focused on core competency of MS Nurses including advocacy, health education, symptom and treatment management • Provide a benchmark for MS nursing practice and nursing care across Europe

Need for unification of European MS Nurses Given the inconsistencies in MS Nursing across Europe, and the many advantages of MS Nurses, there is an urgent need for pan-European unification of MS Nursing supported by a modular educational programme to increase quality of care for people with MS and their families Setting the Standard – MS Nurse Consensus Paper 25 First and Only European CME Accredited MS Nurse Online Training Curriculum – MS Nurse PROfessional 25

Vital statistics: 2, 721 registered users 2, 721 total registered users across 30 different countries Spain 1, 672 South America 17 Austria 26 Romania 3 Italy 331 Greece 9 Denmark 4 India 6 UK 244 Hungary 7 Norway 5 Saudi Arabia 5 Ireland 120 Switzerlan d 22 Australia 6 Poland 3 Czech Rep 54 Netherlan ds 6 Portugal 4 Turkey /Israel 4 Belgium 12 Thailand & Philippine s 7 France 5 Finland/ Sweden 3 South Africa 5 Slovakia 2 Germany 120 USA/ Mexico/ Canada 19 For 26 the period March 2013 – October

2015 Launches – Coming Soon Switzerland: 3 November (German, French and Italian programmes). Link on Swiss MS Society website and newsletter article Belgium: Currently securing local accreditation. Launch planned for 16 th November France: Currently securing local accreditation. Launch planned for end of 2015

New Launches • 2016 aims and priority countries for discussion: – Norway – Russia (TBC) – Hungary – Romania (TBC)

New Module – Rehabilitation 2016 • Progress on new module • Content (including work/employment) • Involve other partners • Funding

Under Pressure • A photojournalistic translation of the MS Barometer findings on inequalities in healthcare and social support in Europe • A means of allowing people with MS to tell their own stories about the impact of the condition on their lives. 30 30

EMSP and the EU • EMSP is working closely with the European Parliament and the European Commission, including the European Medicines Agency • EMSP hosted two events in the EP in 2015: • 24 March: launched the Employment Pact for People with MS • 26 May, on the occasion of World MS Day: Call to Action on Access to Employment for People with MS • November 2015: Strasbourg plenary session with the “Breaking down the barriers for people with MS” campaign 31 31

…. and Finally • Persons with MS are the real experts on their conditions • We must find ways to appropriately include people with MS in the decision-making process in all areas affecting their quality of life • It is not just an option but a must 32

2016 Events We look forward to welcoming you at the EMSP 2016 Spring Conference organised in partnership with MS forbundet When? 17 – 18 May 2016, Thon Hotel Opera, Oslo 33 33

www. emsp. org Thank you! Contact us: European Multiple Sclerosis Platform anne. winslow@emsp. org Rue Auguste Lambiotte 144 B-1030 Brussels +32 2 305 80 12 34 34