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ENCA 2016 - Genoa - Dieter Wiek
The document discusses the activities of EULAR PARE (European League Against Rheumatism Patient Research Partner). It outlines PARE's objectives of raising awareness of rheumatic and musculoskeletal diseases, supporting patient organizations, educating patient representatives, and enhancing patient involvement. It describes two of PARE's main programs - the Knowledge Transfer Programme, which funds collaboration projects between organizations, and the Engagement Programme, which aims to improve quality of life for people with rheumatic diseases through national organizations. It provides examples of other activities including an annual conference, writing competition, newsletter, and involvement in research initiatives.
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ENCA 2016 - Genoa - Dieter Wiek
- 1. PARE’S Activities –Introducing EULAR PARE Dieter Wiek Chairman of the Standing Committe of PARE ENCA Meeting, Genova 29/09-30/09/2016
- 2. • People withRMDs are actively involved in activities and projects. A user-led / user-centred approach • Work should be transparent, accountable, representative and inclusive • The wider community of people with RMDS should benefit from activities • PARE’s and its member organizations’ activities and work are characterized by collaboration and partnership Values and Principles PARE 2 19/10/2016
- 3. Raising awareness Supporting national patient organisations for RMDs Educating patient representatives and their organisations Extending and improving the network of patient organisations Enhancing patient involvement in all areas Political lobbying on EU level (Brussels) Objectives of EULAR PARE 3 19/10/2016
- 4. A glance atEULAR PARE Activities Knowledge Transfer Programme Engagement Programme
- 5. • Apply fora grant! The total sum of € 15. 000 will be awarded to successful project applications annually • Programme designed for organisations to learn from each other • Programme opens 1 October – send applications in by 31 December • Read guidelines and reports of former successful projects on EULAR website • http://www.eular.org/pare_knowledge_transfer_prgm.cfm Knowledge Transfer Programme 5 19/10/2016
- 6. Aim & Objectives Improvethe quality of life of people with RMDs by engaging with national organisations Raise the profile of RMDs & of the organisations involved Facilitate a mechanism for national organisations and EULAR to collaborate nationally Foster collaborations between EULAR member organisations and other stakeholders at national level Share knowledge about EULAR programmes and activities http://www.eular.org/st_com_pare_engagement.cfm Engagement Programme 6 19/10/2016
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- 9. • Finland, Sweden,Denmark, Norway and Iceland • September 2 days in Stockholm and January 2017 2 days in Finland • Objectives: - design a common Nordic youth camp –concept - create channels that could help young people stay in touch between the annual meetings, e.g. by social media channels - get more youth members to all associations - start with Nordic camp, learn from that and create European camp EULAR Knowledge Transfer Programme – application 9 19/10/2016
- 10. • Annual educationalconference organised by PARE • To inspire, educate and empower the delegates and their national organisations by providing expert speakers and sharing best practices • The 19th annual conference was in Sofia 2016: >120 delegates from 33 countries - http://www.eular.org/pare_annual_conference.cfm • Workshops on wide range of topics e.g. comorbidities, online educational tools, transition phase of young people with RMDs, setting up a youth group, improving communication between patients and their healthcare team, changing perceptions of RMD Annual European Conference of PARE 10 19/10/2016
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- 12. WAD 2016 It‘sin your hands – take action http://www.worldarthritisday.org/ 12 19/10/2016 li
- 13. • Standing Committeemeeting at Congress • PARE sessions, well attended • Participate actively submit abstracts – opens 1 October, ends 31 January 2017 http://www.congress.eular.org/abstract_submission.cfm seize the opportunity to share what is happening in your country • PARE booth – place to meet European Rheumatology community, chance to display what is happening in your country Annual European Congress of Rheumatology 13 19/10/2016
- 14. • Annual writingcompetition • Patients across Europe share their individual stories to encourage others and create awareness • Best essays are compiled for an annual booklet • Powerful tool to demonstrate the courage, wisdom and visions of people with RMDs • http://www.eular.org/myUploadData/files/Stene %20Prize%20Rules%202017%20-%20final.pdf • Entries by 31 December • “Early diagnosis and access to care …The ideal world and the reality …” Edgar Stene Prize – the voice of the patients 14 19/10/2016
- 15. • E-newsletter ofStanding Committee of PARE • Issued 3 times a year plus special EULAR congress issue • Features among other items reports from national member organisations • Your input valued - please share your news • http://www.eular.org/pare_newsletters.cfm E-Breakthrough 15 19/10/2016
- 16. Patient involvement inresearch
- 17. EULAR Patient ResearchPartner Network Northern Europe L. Andersen, Denmark H Bertheussen, Norway K. Fligelstone, UK R. Hawkins, UK A. Higginbottom, UK A. Kent, UK K. Lerstrøm, Denmark R. Mahapatra, UK N. Nestor, Ireland F. O’Nia, Ireland M. Toft, Denmark S. Stones, UK J. Walker, UK Central Europe Southern Europe G. J. Aarnerud, The Netherlands M. Bakkers, Netherlands P. Balazova, Slovakia N. Caeyers, Belgium M. De Wit, Netherlands E. Decantere, Belgium K. Eickholt, Germany D. Hollander, The Netherlands F. Klett, Switzerland G. Severijns, Belgium J. Van Rompay, Belgium C. Rusthoven, The Netherlands G. Von Krause, France J. Welling, NL K. Werner, Switzerland D. Wiek, Germany C. Carvalho, Portugal S. Makri, Cyprus F. Marchiori, Italy E. Mateus, Portugal D. Mazzoni, Italy D Papastavrou, Greece I. Pitsillidou, Cyprus T. Jasinski, Estonia C. Zabalan, Romania B. Boteva, Bulgaria S. Bojinova, Bulgaria Eastern Europe
- 18. Activities of PatientResearch Partners EULAR Management Recommendations Points to consider Classification criteria Health Professions Projects Review of lay summaries for Annals of Rheumatic diseases EULAR Study Groups Review of grant proposals: - Patient reported Outcomes - Pain - Osteoarthritis EU RESEARCH Horizon 2020 / IMI / FP7 • APPROACH • AutoCure • BTCure • EUPATI • Eumusc.Net • EUROteam • HarmonicSS EMA - Rheumatoid Arthritis - Adult onset Still disease - Systemic Sclerosis FOREUM Research Foundation Secretariat • Coordination of the PARE PRP network • Implementation of recommendation for inclusion of PRPs in scientific initiatives • Advice to researchers Optional: • Pharmaceutical industry • National PARE organisations • Executive Committee member • Scientific Committee member • Review of research applications • Involvement in research projects
- 19. Reference cards andbrochure
- 20. Reference cards andbrochure - your local edition Use the EULAR edition as a basis and translate to your own language Aknowledgment to EULAR
- 21. Scientific language –understandable
- 22. State of theart science – translate into your language!
- 23. Discussion Ideas orinput for our agenda / work? Future projects for EULAR support – discuss and share ideas with us Communication with you and your organisation – what could be improved? Define liaison! Participation at PARE Annual Congress in Lisbon, Portugal, 23-26 February? - contact Maria, Birte for details concerning bursary, conditions, … - observe strict deadlines 23
- 24. 19 October 201624 Thanksfor your attention
Editor's Notes
- #5 PARE newsletter "Breakthrough" It is published twice a year and contains exciting news about the Standing Committee’s work WITH ONE VOICE Definition of PARE more clearly - value and contribution to overall strategy of EULAR Lobbying tool/ also for policy makers PARE Directory This directory is a tool to increase the level of knowledge of European PARE (People with Arthritis/Rheumatism in Europe) organisations about each other. The data provided by the directory serves as a tool for EULAR and its organisations with common aims and objectives to be able to help and learn from each other. Updated yearly by the secretariat STENE BOOKLET Important tool to provide personal perspective / experience of day to day living with an RMD – compelling and very useful to shift focus from diagnosis and treatment to implications and first hand issues.
- #13 Picture stands for one emotional and positive , life-affirming story. We determine what kind of life we are going to live.
- #14 Share your material by displaying it at the booth.
- #17 EULAR has recognised the pivotal role of patients in the development of recommendations for the management of RMDs Patient representatives increasingly engage with researchers, for better outcomes and enhanced credibility EULAR has developed a set of recommendations for the inclusion of patient representatives published in the Annals of Rheumatic Diseases - Task Forces involve at least 2 patients EULAR has established a network of trained Patient Research Partners. Currently 40 in number, they can be contacted whenever a need for reviewers of scientific research projects or active participation of trained patient representatives is required
- #20 Cards: Tips and practical information for both researchers and patient research partners Brochure: to explain the different steps of patient involvement in more detail for all parties involved The different phases of PRP involvement for both researchers and PRP Preparation During Meetings Debriefing Review Process
- #21 Cards: Tips and practical information for both researchers and patient research partners Brochure: to explain the different steps of patient involvement in more detail for all parties involved The different phases of PRP involvement for both researchers and PRP Preparation During Meetings Debriefing Review Process
- #22 PARE led project to improve the dissemination of EULAR recommendations among patients in Europe in order to improve access to this vital information in a lay format Lay summaries available soon – please discuss how to disseminate and implement! EULAR Recommendations / Selected articles from Annals of Rheumatic Diseases: top publications in field of Rheumatology Translated in lay version Lay version is checked by PRP Final English lay version is available online for everyone National/local organisations can translate lay versions into their own language state of the art research = available for everyone!
- #23 EULAR Recommendations / Selected articles from Annals of Rheumatic Diseases: top publications in field of Rheumatology Translated in lay version Lay version is checked by PRP Final English lay version is available online for everyone National/local organisations can translate lay versions into their own language => state of the art research = available for everyone!