Patiëntenparticipatie in

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1 Patiëntenparticipatie in Europees perspectief Marleen Kaatee Oprichter & voorzitter

2 Patiëntenparticipatie in Europa: 1. PSC Patients Europe 2. EMA 3. ERNs, European Reference Networks

3 Noodzaak: internationaal Orgaan-specifieke patiënten organisatie M&M, Members & Money Main stream, traditioneel Std informatie / voorlichting / lotgenotencontact Meerdere aandoeningen Ledencontact: éénrichting, nauwelijks interactie Bestuur wellicht onbekend met zeldzame ziekten en HRQoL Nationaal Zeldzaam: ziekte-specifieke benadering Beter worden -> onderzoek Zeldzame groep, innovatief Belangenbehartiging essentieel, o.a. onderzoek Eén aandoening -> focus 24/7 contact, hechte groep, dynamisch Initiatiefnemers vaak Patient Expert / mantelzorger Internationaal

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14 ERN RARE-LIVER : CBG College Dag European Reference Networks (ERN)

15 ERN Blueprint for Patient Involvement Input into ERN Board: Identify potential partners and existing stakeholders Strategic planning including expand network scope and coverage Monitors the activity, outcomes, and initiatives of the Network Established mechanisms to hear from and incorporate the voice and opinion of patients and families Develops and provides access to information adapted to the specific needs of patients Standardised common patient experience tool Improve the safety and quality of care base on patients experience Data Sharing: Promotes and/or facilitates the use of information and communication technology Virtual consultation and share expertise with local hospitals Target Improvements in Rare Diseases Research Activities Knowledge Generation & Dissemination Training & Education Specialist Advice Research Set research priorities Supports collaborative research Disseminate research project information and results Recruitment to clinical trials and studies Shared registries and databases Knowledge Generation & Dissemination Establish patient pathways and cross-border pathways based on patient needs Develop, disseminate and implement guidelines and protocols Review and disseminates expertise, best practice and evidence Discuss new treatments, therapies, and health care technologies Training & Education Provides education and training Share experience, exchange knowledge and best practice and expertise within ERN, between ERNs and wider community Patient Care Inform patients and families about patient pathways Disseminates information on patient safety standards and safety measures Enabling reporting possible safety incidents or adverse events 15 Source: EC AMT Operational Criteria for Networks

16 ERN RARE-LIVER : CBG College Dag 2018 RN RARE-LIVER : CBG College Dag 2018 j.degraaf@hypofyse.nl Open Eurordis Online GOAL: To Build the Capacity of rare disease Patient Advocates at large, as well as a select number of Researchers and Clinicians, so that they can go on to advocate for rare diseases at both local or international levels. Training modules Face-to-face meetings Peer-to-peer contacts

17 ERN RARE-LIVER : CBG College Dag 2018 ERN-RARE-LIVER Management Board 1 Patient Lead peadiatrics 1 Patient Lead adults 3 pillars Per pillar: 1 Patient Lead & 1 Vice Patient Lead 372 jaar ervaring

18 ERN RARE-LIVER : CBG College Dag Voorbeeld van resultaat

19 ERN RARE-LIVER : CBG College Dag j.degraaf@hypofyse.nl Take home messages 1. Internationaal insteken noodzaak 2. Legio kansen om patiënten vertegenwoordigers te betrekken, in iedere fase van uw werk 3. Alle betrokkenen moeten degelijke training hebben 4. Kies de juiste gesprekspartner 5. ERNs hebben de toekomst

20 Dank u wel!