Physiotherapie ECORN-CF T.O.F. Wagner Pneumologie/Allergologie Klinikum der Johann Wolfgang Goethe-Universität

ECORN-CF Wie funktioniert das? Wie wird die Qualität überprüft gesichert? Beispiel Wie geht es weiter?

European Centres of Reference Network for Cystic Fibrosis ECORN-CF 16 associated partners of the CF care team and of the patient organisations (GER,UK,BE,NL,SWE,ROM,POL,LIT,CZE) Collaborating partners* FRA,ESP,SLO,AT,DK,GR,TUR etc. *Full duties, full rights, no funding We have 16 associated partners of the CF care team and of patient organisations – to have the patient organisations is of utmost importance, since this is wehre the questions are (GERmany, UK, BElegium, the Netherlands, SWEden, ROMania, POLand, LIThuania, and the CZEck Republic) In addition to this we have Collaborating partners* In FRAnce, ESPain , SLOvakia, ATAustria, Denmark, GReece, TURkey etc. The only difference bewteen the assicaited aprtners and the collaborating partnbers is that the latter do not receive any funds from the EU ehich means Full duties, full rights, but no funding

European Centres of Reference Network for Cystic Fibroisis ECORN-CF Expertenrat für Patienten Expertenrat für Mitglieder des Behandlerteams Qualitätskontrolle Evaluation der QoL, Inanspruchnahme, Impelmentierung des European consensus

All collaborating partner-countries provide expert advice to patients and care team members…. There will be a transfer of knowlegde and expertise throughout Europe to guarantee the same level of expert advice in all partner countries… Zeigen Sie das Dia, dann die Animation – dann Well: all answers are quality checked and all are transferred into the central archive which means most question answer-pairs have to be translated to English since this is the language of the central archive. We have to say that not all questions are transferred to the central archive since it does not make sense to translate a question and the corresponding answer which addresses some specific aspect of the social security system in Germany or any other country specific aspect

Here I show you very quickly how the system works – please disregard most of teh slide – the only points of interest in teh context of my talk are at teh very right of the diagram: first of all it again stresses the importance of the European Consensus and then it come to the idea of extending the reference catalogue – if no other way exists by including additional European Consensus documents. The firs document we have started to get under way is a patient information on how to travel with CF – one of the most important results of our last quality round table. ECORN-CF – Flow Chart Version 1.6

Aprox. 88% of all QAs have been translated The central archive contains all questions and answers (QAs) that have been translated, i..e. all QAs of more than national relevance 940 QAs in the archive Aprox. 88% of all QAs have been translated Now i come to the question of my talk: what do patients want to know? The central archive contains all questions and answers (QAs) that have been translated, i..e. all QAs of more than national relevance 570 QAs in the archive Aprox. 88% of all QAs have been translated

Quellen/Consensuspapiere

Qualität der Antworten

Qualität der Antworten

Qualität der Antworten

Beispiel

Beispiel

Beispiel

Beispiel

ECORN-CF Expertenrat für Patienten und Mitglieder des Behandlerteams Verbesserung der Qualität – von den Besten lernen Abhängig vom Internetzugang Dei meisten Fragen können unter Zuhilfenahme der verfügbaren Guidelines (European Consensus) beantwortet werden Die Fragen decken genau die Bereiche auf, wo es einen European Consensus noch nicht gibt Travelling with CF – unser erstes Beispiel So let me summarize what ECORN-CF can contribute to CF-CAre? ECorn-CF is an Expert advice and quality program which Raises the level of expertise and ease of access in many member states of the European Union but It only addresses people with access to the internet Relating to the topic of my talk we can say From the many questions most can be answered on the basis of a European Consensus – thanks to the ECFS One area where European Consensus is lacking: is Travelling with CF – this is on its way now and the partners of ECORN-CF and the ECFS will try to close this gar soon

ECORN-CF Zukunft ECORN-CF geht über auf die Homepage von CF-Europe Finanzierung noch unklar Mukoviszidose e.V. ECFS Eurordis EU (EUACRD) So let me summarize what ECORN-CF can contribute to CF-CAre? ECorn-CF is an Expert advice and quality program which Raises the level of expertise and ease of access in many member states of the European Union but It only addresses people with access to the internet Relating to the topic of my talk we can say From the many questions most can be answered on the basis of a European Consensus – thanks to the ECFS One area where European Consensus is lacking: is Travelling with CF – this is on its way now and the partners of ECORN-CF and the ECFS will try to close this gar soon