Crossborder health care The patients perspective YOUR perspective

Cross-border health care The patients’ perspective: YOUR perspective? ! Dr. Cor Oosterwijk National Patient Alliance for Rare and Genetic Diseases VSOP The Netherlands EMRa. Di closing event 17 th February 2020 – Palais des Congrès, Liège 1

84 member organisations ADCA Vereniging Nederland • ALS Patients Connected (APC) • Amyloïdose Nederland • Bardet-Biedl Syndroom Stichting • Belangengroep MEN • Belangenvereniging LOA/LHON • Belangenvereniging van Kleine Mensen (BVKM) • Belangenvereniging Von Hippel-Lindau (VHL) • Care 4 Brittle. Bones • Christianson Syndrome Europe • CMTC-OVM Vereniging • Contactgroep Marfan Nederland • DEBRA Nederland • DSDNederland • FOP Stichting Nederland • Fragiele X Vereniging Nederland • Fabry Support & Informatie Groep Nederland (FSIGN) • Galactosemie Vereniging Nederland (GVN) • HME-MO Vereniging Nederland • Vereniging voor Ichtyosis Netwerken • • Interstitiële Cystitis Patiëntenvereniging (ICP) • Jeugdreuma Vereniging Nederland • Laposa: Landelijke Patiënten- en Oudervereniging voor Schedel- en/of Aangezichts-afwijkingen • LGD Alliance Nederland • Lichen Planus Vereniging • Longfibrose Patiëntenvereniging • Macula Vereniging • Mastocytose vereniging Nederland • MSS Research Foundation • Nederlandse Cystic Fibrosis Stichting (NCFS) • Nederlandse Hypofyse Stichting • Nederlandse Klinefelter Vereniging (NKV) • Nederlandse PKU Vereniging • Nederlandse Rett Syndroom Vereniging (NRSV) • Nederlandse Vereniging van Hemofilie-Patiënten (NVHP) • Nederlandse Vereniging voor Patiënten met Paragangliomen • Nephc. Europe • NFVN: Neurofibromatose Vereniging Nederland • NVN: Nierpatiënten Vereniging Nederland • NINA Foundation • OSCAR Nederland • Parkinson Vereniging • Patiëntenvereniging Fibreuze Dysplasie • Patiëntenvereniging MED SED • PCD Belangengroep • Platform. CHD • Prader-Willi Fonds • PSC Patients Europe • SAS: Stichting voor Afweerstoornissen • SCCH Vereniging • SGA Platform • Spierziekten Nederland • Stichting AA & PNH Contactgroep • Stichting Cure ADOA • Stichting De Ontbrekende Schakel • Stichting Diagnose Kanker (SDK) • Stichting Downsyndroom (SDS) • Stichting Lynch Polyposis • Stichting MRK-vrouwen • Stichting Noonan Syndroom • Stichting PHA Nederland • Stichting Pierre Robin Europe • Stichting RPF • Stichting Prader-Willi Syndroom • Stichting Rubinstein Taybi Syndroom • STSN: Stichting Tubereuze Sclerosis Nederland • Patiëntenplatform Sarcomen • Syringomyelie Patiënten Vereniging • Vasculitis Stichting • Vereniging Anusatresie (VA) • Vereniging Cornelia de Lange Syndroom • Vereniging Oog in Oog • Vereniging van Allergie Patiënten (VAP) • Vereniging van Ehlers-Danlos patiënten (VED) • Vereniging van Huntington • Vereniging van patiënten met Erythropoëtische protoporphyrie • Vereniging voor Angio Oedeem • Vereniging ziekte van Hirschsprung • VKS: Volwassenen, Kinderen en Stofwisselingsziekten • VOI: Vereniging Osteogenesis Imperfecta • VOKS: Vereniging voor Ouderen en Kinderen met een Slokdarmafsluiting Kandidaatleden: HEVAS • Stichting De Negende Van • Kort. Maar. Krachtig

The patient perspective – also your perspective? Integrity in healthcare is acting as if it concerned your child, your father or your mother or……. What means your integrity for the patient if you are working …. • • • as a doctor? as a hospital manager? for a health insurance organisation? for a biopharmaceutical company? as a policy maker for a governmental organisation? 3

Philippe Pakter & Lisiane - I 4

Philippe Pakter & Lisiane- II 5

CBHC: Patients’ challenges Where to find the best care: local and/or national and/or cross-border? • • • After the diagnosis: Where to start? Who knows? Where information? Qality verses distance Financial consequenses? 6

The EMRa. Di Patient Sounding Board (PSB): Role and Composition Role - To advise on: • • National Plans for Rare Diseases: cross-border priorities Exchange of quality documents for the care of rare disease Improving the information on cross-border healthcare Patient participation in medical research Composition: • • • Huntington disease Duchenne muscular dystrophy Chronic myeloid leukaemia (CML) Phenylketonuria (PKU) Silver-Russell syndrome Ra. Di. Org & VSOP 7

PSB Recommandations: National Plans After comparing of the three national plans, the PSB advised to prioritise for the EMR region: • Awareness in health care outside the centres of expertise • Knowledge and education • Availability of therapy • Quality standards • Organisation of care and care networks • Policy regarding centres of expertise Ø With special attention for undiagnosed patients, psychosocial care and the need for partnering with patient organisations 8

EUCERD Criteria for designation of Co. Es for RD in MS 1. Capacity to produce and adhere to good practice guidelines for diagnosis and care. 2. Quality management in place to assure quality of care, including National and European legal provisions, and participation in internal and external quality schemes when applicable. 3. Capacity to propose quality of care indicators in their area and implement outcome measures including patient satisfaction. 4. High level of expertise and experience documented, for instance, by the annual volume of referrals and second opinions, and through peer-reviewed publications, grants, positions, teaching and training activities. 5. Appropriate capacity to manage RD patients and provide expert advice. 6. Contribution to state-of-the-art research. 7. Capacity to participate in data collection for clinical research and public health purposes. 8. Capacity to participate in clinical trials, if applicable. 9. Demonstration of a multi-disciplinary approach, when appropriate, integrating medical, paramedical, psychological and social needs (e. g. RD board). 10. Organisation of collaborations to assure the continuity of care between childhood, adolescence and adulthood, if relevant. 11. Organisation of collaborations to assure the continuity of care between all stages of the disease. 12. Links and collaboration with other Co. E at national, European and international level. 13. Links and collaboration with patient organisations where they exist. 14. Appropriate arrangements for referrals within individual Member States and from/to other EU countries if applicable. 15. Appropriate arrangements to improve the delivery of care and especially to shorten the time taken to reach adiagnosis. 16. Consideration of E-Health solutions (e. g. shared case management systems, expert systems for tele-expertise and shared repository of cases). 17. NI: Acknowledgment Board of Directors

Dutch assessment procedure for Centres of Expertise (Co. E) Patient organisations VSOP (kandidate) Co. E SAB Orpha. Net NFU Bo. D Hospital Committee Minister VWS

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https: //neurofibromatose. nl/wegwijzer/zorgnetwerk-nf 1/kaart-zorgnetwerk-nf 1/maastrichtumc/ 12

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PSB Recommandations: Qality documents Recommandations • Autorisation needed by both medical professionals and patient organisations • Make smart use of already available documents in the three countries • Always develop a patient version next to the version for medical professionals to enable shared decision making and self care. The patient can be the ‘information carrier’. 14

PSB recommandations: Information on Cross Border Health Care Main resources • Orpha. Net • National Contact Points (NCP’s) Linked resources (referral, no doubling) • Health ensurance organisations (multi-language) • Patient (umbrella) organisations • Centres of expertise 15

https: //zeldzameaandoening. nl/thema-overzicht/grensoverschrijdende-zorg/zorg-in-het-buitenland 16

PSB Recommandations: Patient Participation in research Early involvement: • Multi-annual research agenda (local, national, international (ERN)) • Research protocol • Outcomes measures: medical and quality of life • Forgotten reseach area: (psyco)social care Ø Patient participation must be regular part of funding policy and funding budget. Ø Guideline for Co. E currently being developed by VSOP 17

REPORT 29. 1. 2019 A 8 -0046/2019 on the implementation of the Cross-Border Healthcare Directive (2018/2108(INI) 22. Encourages the Member States and border regions to deepen cross-border healthcare cooperation, in an efficient and financially sustainable manner, including by providing accessible, sufficient and understandable information, in order to secure the best possible care for patients; asks the Commission to support and stimulate a structural exchange of best practices among border regions; encourages the Member States to use these best practices to also improve healthcare in other regions; 18

Key messages 1. In the EMR region, more concrete arrangements between (more) health ensurers, hospitals and health care providers are needed. 2. A equal policy for governmental accreditation of Centers of Expertise in Belgium, Germany and The Netherlands is urgently needed. 3. The National Contact Points in the three countries need to invest in information on CBHC that specifically for rare disease and align this information amongst each other. 4. The gap between academic medical care and patients’ daily life needs to be bridged. A case manager needs to be employed by the patient organisation and/or the Co. E. He/she can then work on the development of medical care pathways and related description of the patient journey in a border region. 5. Border Regions like the EMR need special attention within the European Reference Networks. 6. Medical experts need to be enabled by their hospitals to be able to invest in cooperation, networking and policy development. 7. Idem: patient organisations by their governments. Ø Be integer: Listen to the patients and make their perspective your own perspective! EMRa. Di closing event – 17 February 2020 Liège 19

Thanks to our (co-)financers EMRa. Di closing event – 17 February 2020 Liège 20