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Two decades of patient advocacy in multiple sclerosis: The success story of the European Multiple Sclerosis Platform 

Two decades of patient advocacy in multiple sclerosis: The success story of the European Multiple Sclerosis Platform
Two decades of patient advocacy in multiple sclerosis: The success story of the European Multiple Sclerosis Platform

Christoph Thalheim

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Patient advocacy in MS—how did it start?

As in most, if not all patient advocacy groups, there is a patient, a family member, or a doctor at the beginning of the story, who personally experiences an ‘unmet need’—no advice and support for the newly diagnosed, no information material (or not the right sort), no one with any real interest to exchange personal stories with, no one who understands, who cares, and who tries to help.1,2,3,4 To match this ‘unmet need’, this situation calls for a ‘self-help group’ defined as a group of people being affected by the same disease, unified by the wish to help each other. If all goes well and a ‘critical mass’ of affected patients and a ‘visionary person thinking beyond his/her own needs’ find each other, then the question of ‘How can we not only help each other, but influence our healthcare and social environment?’ might mark the birth of a patient advocacy group. In the case of multiple sclerosis (MS), the honour of being the first person who created a sustainable self-help- and advocacy movement goes to American lawyer Sylvia Lawry, who founded first the National Multiple Sclerosis Society in the United States in 1947 and co-founded the global Multiple Sclerosis International Federation (MSIF) a bit later in the same year.5 As in many similar stories, the nucleus for a disease-specific advocacy- and research support group was coming through a personal experience within the own family; in Sylvia Lawry’s case it was the diagnosis with MS for her brother Bernard. She rightfully can be regarded as the most impactful advocate for people with MS ever, as she transformed the idea of self-help and personal stories to the level of a political influencer, as her picture of 1955 with Ralph Glock, president of the US National MS Society and senator Everett M. Dirksen as key speaker of the Society’s Annual National Conference suggests (Fig. 21.1).

Fig. 21.1 Sylvia Lawry, director of the National Multiple Sclerosis Society (US), in 1955.

Fig. 21.1 Sylvia Lawry, director of the National Multiple Sclerosis Society (US), in 1955.

While Lawry died in 2001, her idea was kept alive worldwide and remains so until today, with the globally acting Multiple Sclerosis International Federation and the regionally focused European MS Platform working hand in hand on Lawry’s vision of a world without multiple sclerosis.

When 27 national MS patient organizations decided in 1989 that a European umbrella organization was needed, there were mainly three points which encouraged those European Multiple Sclerosis Platform (EMSP) founders to act together. It is probably fair to say that the envisaged European identity for the MS communities in Europe was the overarching vision, while the practical need for funds through EU-(co-) funded projects and the wish to strengthen the first goal through capacity building for the less developed MS patient organizations were the real key drivers for the creation of the platform.

First, the founding members installed a ‘moving virtual office’ driven by the volunteer EMSP President and a local assistant with a commitment of one day per week.

Some basic cross-border projects arose from this structure, but it took more than a decade for the EMSP members to realize that ‘you’ll get peanuts if you pay for peanuts’. The installation of a small, but permanent liaison office in Brussels was the logical consequence—replacing the dysfunctional mix of national and European responsibilities shared between the EMSP President and his assistant over the past ten years.

Starting in 2000 and strongly supported by both Board and members, EMSP’s first paid staff person in Brussels now added one brick to the next to build a well-respected European voice for the 27 national MS societies and its hundreds of thousands of people with MS being represented by them.

Soon funds were approved by the European Commission towards a multistakeholder project. This, in addition to the organization of regular annual European membership conferences and the progression towards a sustainable network of industry partners, attracted a growing number of national MS societies to the EMSP.

Major EMSP projects—and their value for people with MS and their families

A very early story of success and a good example for a patient advocacy area, in which a cross-border approach was the best way forward to start national lobby initiatives, was a major EMSP conference on Intimacy and Sexuality by People with MS, held in the year 2000 in Oslo, Norway.

Why were participants still speaking about this specific conference even years later? Because for many of them this subject had been a major problem in their home countries, but also a ‘taboo’ subject for discussion in public. In the international environment of a Nordic capital, it suddenly become possible to openly share experiences, explain problems, and identify needs for support through experts and therapies back home. Today, intimacy, sexuality and pregnancy in MS are no longer ‘taboo’ subjects; instead, they form a major part of the abundant information- and guidance materials on offer, even in predominant Catholic countries such as Ireland, Spain, and Poland.

Another key subject for almost every patient organization is the question of sustainable funding for their activities. As mentioned earlier, EMSP identified the huge interest shown by most of its member organizations in becoming part of EU-(co-)funded projects. EMSP partnered early on with experts in EU funding, such as the European Citizen Action Service. By doing so, it was possible to act as multiplier and mediator for MS patient organizations in Central-and Eastern Europe long before they became part of the EU. If you wish, you can regard EMSP as a kind of political actor in this context, because our member organizations in Central and Eastern European (CEE) countries were addressing healthcare and social issues which their governments had not (yet) even thought of.

There was almost always a need to come up with other additional funding sources in the early days of EU project funding. EMSP guidance in multinational projects for people with MS (such as the intercultural and intergenerational learning in a ‘MS Cybercafé’) allowed a transnational approach, not only in the project content, but also in its funding methods. Being one of EMSP’s first EU co-funded projects, the impact on the solidarity between East and West, young and old, disabled patient and healthy IT-specialist in ‘MS Cybercafés’ was not only remarkable because of its multifacet approach, it also created sustainability for the project beyond its period of financial support by the European Commission. Several MS societies identified alternative funding for ‘their MS Cybercafé’—in some places it does exist until today.

A true milestone in EMSP’s lobbying and awareness raising was the approval of the very first MS Report signed by 240 Members of the European Parliament (Petition 842/2001),3 concerning the effects of discriminatory treatment towards persons with MS, within the European Union.

‘ . . . persons with Multiple Sclerosis, and many other chronic long-term illnesses, are subject to varying levels of medical and therapeutic care depending on their place of residence and . . .insufficient priority has been accorded by Member States of the Union . . . to remedying this fact.’

It is worth mentioning in this context that one single European citizen, who did not accept the inequalities in access to therapies and care in her country, initiated the change of this situation for her and many others with the help of engaged Members and Staff of the European Parliament and the facilitation provided by the European MS Platform.

Many new advocacy tools and initiatives were developed by EMSP and its members thanks to this first success in the European Parliament, some of which are still in use today (2019):

At the request of the European Parliament, EMSP developed a European Code of Good Practice in MS,6 with regular updates and connected thematic consensus papers.

Annual European MS conferences for member organizations and stakeholders, focusing on varying subjects such as ‘Sexuality and Intimacy in MS’, ‘Cognitive Dysfunctions and Care for Care Givers’, and ‘Rehabilitation in MS’, used as awareness raising, capacity building, and networking events.

Studies and surveys on FACTS & FIGURES in MS (e.g. the MS ATLAS),7 developed under the leadership of MSIF and therefore providing a global picture, are used for public awareness raising combined with the demand for more efforts by public services until today.

The European MS Nurse Survey (MS-NEED), to understand the varying roles of MS nurses in European countries, identifying best practice for education, certification, training and additional tasks of MS nurses in order to improve patient quality of life and provide incentives to the MS nurses. The results of the survey inspired EMSP’s MS Nurse PRO,8 an online training programme for MS nurses, beating in its reach out all expectations.

As a biannual tool, the MS Barometer9 is a comparative survey based on key MS data being collected by the national MS societies. First launched in 2008, the MS Barometer raises awareness on the geographical divide that underpins the difference in MS management across Europe. It also serves as a benchmarking tool outlining improvements and actions that can be adopted by national MS societies in order to influence their political decision makers. The MS Barometer targets healthcare stakeholders at all levels, including MS patients; healthcare professionals; governmental institutions; insurers and other payers; politicians and financial supporters.

Disease management varies considerably from one country to another. The Barometer provides an overview of the weaknesses and challenges to be addressed in each country covered. It enables EMSP as well as individual MS societies to actively engage with the relevant stakeholders and work together to improve the quality of life for people with MS. Now marking its fifth edition, the MS Barometer has built up a strong track-record in supporting MS advocacy at both European and national level.

How does the MS Barometer work? The MS Barometer is a questionnaire with points scored based on the responses. The goal is for each national administration to score maximum points through the implementation of effective policies which optimize the situation for people with MS. The higher the score, the better the disease management, level of support, and quality of life for people with MS. The questionnaire is structured around the priority policy areas defined in EMSP’s Code of Good Practice and covers four key areas of patient relevance and concern (Table 21.1):

Table 21.1 Four key areas of patient relevance as defined in EMSP’s Code of Good Practice

1. Access to healthcare

2. MS research and data

3. Participation in society of people with MS

4. Empowerment of people with MS

For the future, EMSP expects to obtain most of the data via MS Data Alliance, the planned European Network of National Patient Registries in Multiple Sclerosis.10

Another prominent example of our advocacy tools for both our members and for our work on European level is a ground-breaking multimedia project, called ‘Under Pressure’,11 our answer to the question whether it is possible to reduce health inequalities through visualized cross-border comparison and benchmarking. Our answer was ‘Yes!’—so we bundled our forces with a team of five top-class photographers who accompanied people with MS and their families in 12 different countries.

EMSP’s project website11 tells the stunning stories of those people, hosts an impressive photo gallery of six hundred photos accompanied by informative country profiles and a collection of short video documentaries. The focus of this valuable footage centres on story-telling and awareness raising.

The combination of the MS Barometer data and a selection of Under Pressure photos and videos has proven to be most effective in both national and European level patient advocacy, because it tells true stories of patient journeys backed up by recent survey data.

Job retention or access to employment are major issues for many people with MS. EMSP is determined to open new paths to employment for people with MS and other neurodegenerative conditions. How? By running two flagship projects—Paving the Path to Participation (PPP)12 and Believe & Achieve (B&A)13—with both projects aiming at the implementation of support plans to help people with MS and their employers to cope with their condition while at work.

Paving the Path to Participation (PPP) aims to promote policy change that will support maximum participation of people with MS in the labour market in Europe. Pact PPP relies on a multistakeholder network in its efforts to promote a European Employment Pact. People with MS, employers, healthcare providers, and policymakers are all taking part.

Believe & Achieve (B&A) aims to provide young people with MS with opportunities to work in supportive environments by partnering through paid internships with businesses across Europe, while MS@Work addresses other labour related questions for any person with MS.

Beyond traditional advocacy: Can patients influence the education of healthcare professionals?

MS nurses play an integral role in providing support and advice on everyday issues for people with MS and coordinate a collaborative approach to management. However, as the responsibilities of the MS Nurse continue to expand, the findings of the largest survey of MS nurses across Europe—MS-NEED: European Survey (2010)—highlighted that there are significant disparities in the provision and quality of service provided by MS nurses. Therefore, there is a need not only to raise awareness of the role of the MS Nurse, but also to standardize their training in order to underpin their position in the management of MS and to optimize care for people with MS.

The mission of MS Nurse Professional,8 developed by the MS-NEED Study Group, is:

  • To provide a modular, online training curriculum to support the evolving role of European MS nurses, in line with the recently published MS Nurse Consensus Paper entitled ‘Moving towards the pan-European unification and recognition of MS nurses’.

  • To increase the competency of MS nurses in patient/family advocacy and brokerage, health education, symptom and treatment management.

  • To develop leadership skills for the advancement of patient care.

Meanwhile, over 6,000 multiple sclerosis (MS) nurses enrolled for MS Nurse PRO between 2012 and the end of 2018 and so far more than 1,000 of them finished the online education course successfully.

This ongoing project is led by the EMSP in collaboration with the International Organization of Multiple Sclerosis Nurses (IOMSN) and Rehabilitation in MS (RIMS). Collectively, this group is known as the Multiple Sclerosis-Nurse Empowering Education (MS-NEED). The project’s latest success was an acknowledgement and reinforcement of the support agreement between MS Nurse PRO with the European Committee for Treatment and Research in MS (ECTRIMS).

Big data for better outcomes—patient data collection in registries

Multiple Sclerosis—Information Dividend

As the title of the project suggests, Multiple Sclerosis—Information Dividend (MS-ID) concerns information about MS and the benefits to be gained from such information. In Europe, very limited data are gathered about MS, its incidence, who is taking which drugs as treatment, how MS impacts on the lives of those who are affected, and what additional support the state provides and needs to provide. However, in order to better understand the impact of MS, we have to know the effects it has on society in general. In essence, the MS-ID project consisted of two priorities:

  1. 1. The development and piloting of a European register on MS. This register will gather data on people with MS from organizations participating in the project. The advantage of developing this tool on a European level means that the information will be comparative across borders. For example, one can assert that a treatment accessed by 40% of those with MS in one country may only be accessed by 5% of the MS population in another country. Without this information, no light can be shed on the situation of people with MS in Europe.

  2. 2. Activation of the European Code of Good Practice in MS across the participating organizations, with eventual roll-out to all EMSP members.

Which were the expected achievements?

  • To raise awareness across the EU about MS, enabling stakeholders both at European level and in the member states to better understand the condition and share information on the positive impact of early diagnosis coupled with high-quality treatments, choice of therapies, sufficient social support, and the benefits of good MS management.

  • To identify and address the major inequalities in MS treatment and care across the EU and within member states through the development of new and effective strategies and indicators to measure performance; this will enhance the quality, comparability, applicability, and transfer of statistical and factual data and qualitative information on MS across EU member states.

  • To use high-quality comparable data at EU and transnational levels to positively impact on EU/national MS policy and programmes; ultimately, this will empower those EU citizens directly and indirectly affected by MS.

In short, the MS-ID project was aiming high for an improved, better managed, and more equitable approach to the treatment of MS in Europe, enabling people with MS to contribute and rightfully participate as full and equal citizens in society.

While the three objectives just listed were achieved only in part, MS-ID delivered an unplanned and unexpected result of the highest value: it paved the path as feasibility study to the European Registry for MS (EUReMS).14

As a vital step towards better exploitation of real-world evidence outcome data. Collecting standardized data in national patient registries for temporary pooling and central analysis on European level was the ambitious aim of five national MS registers and six other project partners which gathered in 2011. The fact that by the end of the project in 2014 the number of participating registries had grown from originally five to thirteen is an indirect indicator for success, but it certainly had not made negotiations easier on core data sets, substudy protocols, and data handling routines for the harmonization of the heterogeneous data of the different registers into comparable study data sets.

As often being the case in long-term projects, promised deliverables such as a functioning network of MS registries had to be adapted to the more feasible proof of concept for such a network. The agreement by previously non-connected 13 registries to standard parameters in collection and temporary pooling of vital patient data for the purpose of central analysis of those data on European level!

The most important achievement from the patient advocate’s point of view was (and still is) the movement towards inclusion of more patient-relevant and patient-reported outcomes data,15 coupled by a raised awareness of the cost of illness and burden of disease data as vital factors for the sustainability of our healthcare systems.

Until 2007, very limited data was gathered about MS, its incidence, treatments, and impact on social life and employment. With the MS Information Dividend (MS-ID) project being set up in 2007 and the EUReMS project following in 2011, EMSP become a ‘frontrunner’ on data sharing by independent patient registries and the importance of real-world evidence data16 for healthcare decisions.

Briefly after the first positive interim results of EUReMS work became known, the five biggest MS registries accepted a proposal by industry to develop their own collaboration structure, being identical in part to the one with in EUReMS and using a similar methodology for temporary pooling.

EU bodies and initiatives—targets or partner for patient advocacy?

With the PARENT Joint Action (cross-border patient registries initiative)17 of the European Commission and 17 member states on interoperability questions of patient registries an effort was started in 2013 to give a response to poor cross-border availability of health data for public health and research. PARENT brought added value by providing member states with recommendations and tools for implementation of interoperable and cross-border enabled patient registries—and the EUReMS group was proud to contribute to those recommendations and tools from its own experiences gathered within their project.

The European Medicines Agency (EMA),18 as ‘gate keeper’ for many therapies on the European market, is probably one of the best examples for the seemingly unsolvable ‘friend or foe’ dilemma of patient advocacy groups. I say seemingly, because it is only a very superficial glance which would bring EMA and patient advocacy groups in the opposite corners of the healthcare boxing ring. In reality, they have been working well together for more than a decade and this collaboration is regarded as success story by both sides. Within the MS field, there are plenty of examples where the opinions of EMA and EMSP were initially diverging, but ultimately agreements were reached in all those cases, whether it was on benefit-risk assessments, the value for patients of a new treatment or any other question. Of great help for building trust and mutual understanding is EMSP’s membership in the ‘Patient and Consumer Working Party’ (PCWP),19 which recently celebrated its tenth anniversary. Four to five times a year, EMA representatives and delegates from European patient or consumer organizations meet as PCWP members to discuss questions of mutual relevance.

A great example of how patience and persistence can lead to win-win situations is the ‘Cross-Committee Working Party on Patient Registries’ of the EMA,20 in which EMSP has tried to promote its concept of common core data sets for disease-specific national registries to allow temporary pooling and central analysis for cases, in which single registry data do not provide a sufficient base. After 18 months of discussion, EMA agreed to organize a workshop for MS registries, the regulators, the payers and the market authorization holders (industry) to discuss this concept as pilot for MS and other diseases. As next steps, EMA has started qualification processes for the first few European disease specific registry networks and presented a draft proposal for the use of patient registries for regulatory purposes in December 2018 (Fig. 21.2).

EUnetHTA21 stands for ‘European Network of Health Technology Assessment’; its EUnetHTA Joint Action 3 aims to define and implement a sustainable model for the scientific and technical cooperation on Health Technology Assessment (HTA) in Europe.22 EUnetHTA will support evidence-based, sustainable, and equitable choices in healthcare and health technologies and support re-use in regional and national HTA reports and activities. To develop a voluntary, sustainable European Collaboration on HTA, the model focuses on supporting Members States in receiving HTA relevant information that is objective, reliable, timely, and comparable. It goes without saying, that the (future) role of patients and patient advocacy groups in this process cannot be overestimated; especially in ensuring the integration of patient relevant outcomes data into HTA recommendations leading to payer decisions. Consequently, EMSP is one of six patient or consumer organizations actively pushing for a more meaningful and sustainable involvement of patients in HTA processes.

For a quarter of a century, European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS)23 has served as Europe’s and the world’s largest professional organization dedicated to the understanding and treatment of MS. ECTRIMS works with researchers and clinicians from its member countries and with other organizations that share similar missions and objectives on a worldwide scale, creating networking and collaboration opportunities. The ultimate goal of ECTRIMS is to improve basic and clinical research and clinical outcomes in MS. With the mission to ‘facilitate communication, create synergies, and promote and enhance research and learning among professionals for the ultimate benefit of people affected by MS’, it was a logical, although overdue step by ECTRIMS and EMSP to join forces and formally agree on areas of collaboration in a Memorandum of Understanding as of mid-2016.

What were/are the key challenges and how did EMSP address them?

Lack of financial support by public institutions for costs being necessary to run a European patient advocacy group professionally is the second biggest challenge, this being true not only for EMSP, but for almost all comparable organizations. As a result of several years of patient organizations’ active lobbying, the European Commission finally introduced a support scheme for European patient organizations in 2012 called the ‘Operating Grant’. EMSP was among the first 10 successful applicants and was able to repeat this success twice, until in 2015 new rules were introduced by the Commission. With the collaboration between patient organizations and healthcare industry always being an area of concern for the EU institutions, a limit of 20% had been fixed for industry contribution to patient organization’s core funding, which was manageable somehow as long as the 20% rule was applied for the year in which the Operating Grant was paid. By a simple change of the 20% rule’s application to the year before the payment of the Operating Grant the Commission not only made many of the patient organizations ineligible, but also achieved the opposite of its intention for the change of the rule: Many patient organizations were forced into even closer collaboration with industry instead of the previous healthy diversification between public and private funding sources.

Collaboration with industry is a story of success for EMSP and a permanent challenge at the same time. More precisely: there is an ongoing need to establish case by case, and again and again the right balance between mutually beneficial collaboration and industry’s (understandable) wish to widely promote their products.

Outside of commercial considerations, there are naturally overlapping areas of mutual interest for industry and patients, such as pharmacovigilance, drug efficacy, and more.

Within and beside those overlapping interests, many of EMSP’s awareness raising, capacity building, and advocacy projects have been developed with unconditional grants by pharmaceutical firms and other companies.

To avoid any impression of bias, EMSP has put a major effort into continuously enlarging its network of industry partners in combination with a maximum of transparency, fostering a kind of ‘natural mutual control by competitors’. Mutual respect for the aims and integrity of each party, good understanding of each other’s structures and key representatives, ethical standards as regulated by the EMA requests for transparency, the European Federation of Pharmaceutical Industries and Associations (EFPIA) Code, ABPI Code of Practice, and patient organizations’ own ethical rules—all this helps to manage the working relation as win-win ultimately, but has not been a guarantee of problem-free collaboration in the past and will not be in the future.

EMSP’s work as European voice of people with MS in Europe—what comes next?

According to Wikipedia, there are 50 internationally recognized sovereign states with territory located within the common definition of Europe and/or membership in international European organizations, 36 of which have an MS patient organization with EMSP membership, while in 5 of those countries a second MS patient organization exists. EMSP is therefore seen as the one and only voice of more than 700.000 people with MS in Europe and widely recognized among stakeholders on European and national level. The key stakeholders for our work can be best summarized by Fig. 21.3.

Fig. 21.3 The European Multiple Sclerosis Platform in its professional context.

Fig. 21.3 The European Multiple Sclerosis Platform in its professional context.

EMSP will continue to fight for a better quality of life for all people with MS until in the hopefully not too distant future our work as patient advocates will become obsolete—by a cure for multiple sclerosis!

In the meantime, we see one key area of direct or indirect relevance for people with MS, in which more advocacy efforts on both the national and the European level could have a substantial impact:

Patient-relevant and patient-reported outcomes data15 should be standardized as vital part of real-world evidence,16 required for all kind of healthcare related decisions. This could be done either by the regulator (e.g. for pharmacovigilance aspects), by HTA agencies (e.g. for cost-efficiency questions), or by the healthcare professional. The findings can then be used to improve quality of care.

The importance of a standardized approach to the collection and interpretation of those patient-reported outcomes data (not only in MS) becomes obvious by looking at their potential:

  1. 1. They can help as next step towards more personalized medicines, because they demonstrate more or less impact of a therapy to patient relevant symptoms and consequences of the disease.

  2. 2. They can help to improve cost-efficiency of a therapy by separating those patients with low outcomes (no need to continue with the therapy in question) from those with high outcomes (therapy to be continued).

  3. 3. If standardized patient-reported outcomes data from rehabilitation activities are added to the patient registries, evidence-based recommendations for rehabilitation effectiveness can be given—for potential combination approaches of drug and rehabilitation included.

  4. 4. On ‘cost of illness and burden of disease’ questions, making such registry networks fit for purpose could cooperate with large relevant studies, such as EMSP’s recent 17,000-patient survey in 16 European countries.24 This would allow a cost-and time-efficient minimum Central Office of Information (COI) data set to be completed every five years with a much smaller and shorter control survey.

  5. 5. Once minimum data sets for patient-reported outcomes (and clinical) data will be implemented into all disease-specific registries of a European (or even global) network of MS registries and those minimum data sets will be approved for the use by regulators, HTA bodies, and payers, the concept of patient advocacy will move to a completely different and much more effective level.


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