Conference Conclusions and Recommendations What action for national stakeholders? MODERATOR Prof. Dr. Josef Smolen Past-President, EULAR

This morning we heard  Miklos Soltesz – on how prevention is integral to disability policy  Paul Emery – on the Brussels declaration and the challenge of RMD policy making  Marios Kouloumas – on the personal and society consequences of living with RMDs and how patients have worked together to make work a priority for stakeholders  Alison Hammond - on the crucial need for social participation and rehabilitation policies

This morning we heard  Ingemar Petersson – on the policies and interventions needed to improve work capacity  Gyula Poor – on data in Hungary and the exciting prospect of tackling RMDs in Hungary  Carol Black – on the essential role of fomulating national plans to improve patient outcomes  Stefaan Poriau – on nutrition as an intervention for those living with osteoporosis

Implementing EULAR/Fit for Work RMD recommendations nationally Breakout 1: Dame Carol Black Marios Kouloumas Breakout 2: Ingemar Petersson, Maxime Dougados Presentations and moderated discussion WORKING GROUPS REPORTBACK

Exchange better data on prevalence, incidence and costs of RMDs as well as examples of improving working conditions for workers with RMDs with other national governments and at the EU level What actions would be the most appropriate to implement this recommendation? At the Member States level?Responsibility for action?  National registries are key – with national data. EU level data are useful, but national data will drive national actions. SO: we must define the questions the registry is there to answer  There needs to be a ‘standard of quality’ of registries to make them credible  Sharing the data remains a challenge  Publish registry results to provide evidence base for policy  Physician and patient orgs  Partnership with politicians  Each country must sign up to a standard for data collection – policy makers  There are superb networks that National units can join (EUMUSC.net, HTA exchange) - physicians  Rheumatology groups (physicians and patient partnership)

What actions would be the most appropriate to implement this recommendation? At the Member States level?Responsibility for action?  Early agreement on action – government and employers informed by patient voices must work together to identify the patient as soon as diagnosed to intervene to support workplace flexibility  Employers should be lobbyists themselves for flexible working hours and conditions = protection of economic investment  Disability and its prevention is key to enlightened policy  Patient groups and employers – and trade unions - united to lobby gov’t  Employers groups with patient groups  High level ministerial engagement, such as today and yesterday Pursue active labour market policies which allow employees with RMDs to remain in work or reintegrate into the workforce; ensure this includes flexibility in welfare benefits which allows workers to earn income and claim financial support

What actions would be the most appropriate to implement this recommendation? At the Member States level?Responsibility for action?  Silos of responsibilities must be broken down – cross-gov’t working over time, between Gov’t Departments  National care plans must consider patients, physicians and employers – formulation must be with all these at the start  Make the a case for a ‘national director’ such as in the UK – for Health and Work ministers to work together  Politicians and government infrastructure must take initiative to open communication  All stakeholders.  Dept of Health, Dept of Work/Labour Implement national care plans, with adequate resourcing, for people with RMDs which would promote coordination and cooperation between health and social security institutions and employers, and would ensure improved access to optimal care

What actions would be the most appropriate to implement this recommendation? Adapt Health Technology Assessments (HTAs) and health economic evaluation targets to take into account the clinical and societal impact of RMDs on the patient, and the individual as an employee At the Member States level?Responsibility for action?  Disseminate information about HTAs an their usefulness  Involve patients and other stakeholders in HTAs and educate/empower them  Add alternative assessments of cost- benefit analyses to traditional HTAs with narrow scope  Patient & academic organisations  Governments - Patient & academic organisations  Governments

What actions would be the most appropriate to implement this recommendation? Priority needs to be given to research at (the EU) and national levels on the impact of RMDs on employees, and the health economic benefits of early intervention and better clinical evaluation of employees suffering from RMDs At the Member States level?Responsibility for action?  Compilation of data at both national and European levels; validation of tools  Advocate increased research support (FP8 + national programmes)  Enhance cooperation between clinical research and health economists  Positioning: focus on return on investment, prevalence and burden of diseases  All actors  EULAR (EU) & national organisations  Researchers  Advocacy groups  EUMUSC.NET

What actions would be the most appropriate to implement this recommendation? Ensure that primary care physicians closely collaborate with rheumatologists and other specialists and are supported in making decisions about work disability for workers with MSDs At the Member States level?Responsibility for action?  Expose undergraduates to rheumatology and RMD patients  Involve social security bodies  Combined training & education events (eg. EULAR congress session with primary care physicians)  Universities/ Medical schools, Medical Societies, Education departments  Governments  EULAR and other organisations of physicians and researchers