Access to Information & Cross Border Care As exemplified by the ECORN-CF project April 28, 2009 by Annette Pfalz

2 ECORN-CF – What for? Guidance through the web Questioner-tailored answers European Cross Border Quality Assurance Program On-the-job training for expert teams in all languages

3 ECORN-CF Acronym for „European Centres Of Reference Network for Cystic Fibrosis“ Jointly and in part funded by the European Commission and the German “Christiane Herzog Stiftung” ECORN-CF offers expert advice on the internet in currently 9 languages to lay persons but also to care team members (additionally, all questions & answers are translated into English for quality check) ECORN-CF has a web-based Central Archive in English: all published answers are quality checked

4 The web-based system of ECORN-CF Question asked on ; e.g. local Czech expert advice Czech moderator assigns question to Czech expert via the system 1 2 Czech Question & Answer (QA) is published in Czech expert advice 3 After translation into English  QA is sent to Central ARCHIVE for quality check Central English Archive ≠ English local expert advice! 4 Quality check of answer before publishing in Central ARCHIVE: according to consensus papers? according to guidelines? completeness (all aspects answered?) suitability? rough grading  internal feedback and change of answer if quality not good 5 After quality check: QA (English version) published in Central Archive 6

5 Access to the local expert advice in different languages Access to Central English Archive

6 Example: DUTCH local expert advice Example: GREEK local expert advice

7 Central Archive (in English only) all answers are quality checked

8 Access to information as exemplified by ECORN-CF Back to our topic...

9 Access to information & ECORN-CF If you hear the catch phrase “access to information”  you might immediately think of a data base. Data bases containing exhaustive information about the topic are important with regards to access to information. However, ECORN-CF is not a data base in the proper meaning of the word.

10 Access to information & ECORN-CF ECORN-CF provides the possibility to ask a question specific to the questioner’s personal situation – be it a CF patient or a family doctor. Members of the care team (e.g. family doctors, physiotherapist, etc.) can register as “professionals.” Questions & answers asked by professionals cannot be seen by regular users.

11 Access to information & ECORN-CF ECORN-CF is more like a living, interpreted, personalized “data base”. Or it is – more accurately – like a link between information sources and the questioner. You can imagine it as follows...

12 Access to information & ECORN-CF A question comes in. The expert compiles all relevant information from the literature, data bases, etc. and “reads it out” to the questioner, also adding his/her personal expertise. The act of “reading it out” is done by writing a personal answer to the questioner.

Additional Benefit? Access to information & ECORN-CF

14 Access to information & ECORN-CF It saves the questioner the trouble of having to search the whole web for relevant and trustworthy information. An expert who is well-read in the specific area of expertise is a perfect “pilot” through the “universe” of all available information.

15 Access to information & ECORN-CF The expert advice is a good model to bring existing information (e.g. scientific articles, research papers, results of studies, expertise…) and interested parties like patients, family doctors, physiotherapists with questions together.

16 Access to information & ECORN-CF The web-based expert advice is not supposed to substitute the regular appointments with the local CF Centres but is an additional offer. Whenever the user has a question about CF he/she can get an answer from an expert.

17 Access to information & ECORN-CF Illustration of the benefit: Imagine you would like to send serial letters by using an Excel sheet for the addresses and salutation and a Word document for the rest of the and then sending it out with Outlook. ? ? ?

18 Access to information & ECORN-CF ? ? ? You do not have a clue how to merge these three data sources. What would you prefer?

19 Access to information & ECORN-CF Entering search words in Google hoping to find pieces of the solution in existing forum entries or other data bases... Looking up the answer in the Microsoft help tool... Consulting a printed handbook with 900 pages... OR...

20 OR... would you prefer to ask somebody who knows perfectly how to merge Excel, Word and Outlook and thus can explain to you exactly how to do it? Access to information & ECORN-CF

21 Cross Border Care as exemplified by ECORN-CF A few more words about...

22 Cross Border Care & ECORN-CF The main focus of the local ECORN-CF system is not Cross Border Care since ECORN-CF particularly offers the users to ask their questions in their mother tongues, i.e.: with regards to the local ECORN-CF system the care stays within the borders.

23 Cross Border Care & ECORN-CF However, all local Questions & Answers from the expert advices in currently nine languages are translated into English and then sent to an internal Quality Check  Chart – points 4 to 6

24 The web-based system of ECORN-CF Question asked on ; e.g. local Czech expert advice Czech moderator assigns question to Czech expert via the system 1 2 Czech Question & Answer (QA) is published in Czech expert advice 3 After translation into English  QA is sent to Central ARCHIVE for quality check Central English Archive ≠ English local expert advice! 4 Quality check of answer before publishing in Central ARCHIVE: according to consensus papers? according to guidelines? completeness (all aspects answered?) suitability? rough grading  internal feedback and change of answer if quality not good 5 After quality check: QA (English version) published in Central Archive 6

25 Cross Border Care & ECORN-CF The quality assurance program uses single- question feedback as a first step to ascertain the same level of quality in all expert language groups. Thus, the Central Archive and the feedback system allows that all questions are checked for quality in the same language (English) and compared to the accepted standards of Care (Consensus).

26 Cross Border Care & ECORN-CF In this way, expert teams in all languages are trained “on the job” of advice giving to reach the optimal level. ECORN-CF Central (English) Archive = European Cross Border Quality Assurance Program

27 Cross Border Care & ECORN-CF Furthermore, the local ECORN-CF system can be used easily as a virtual Cross Border Care Tool (e.g. a Greek person can ask a question in the local English expert advice; the person has to know English).

28 ECORN-CF – What for? Guidance through the web Questioner-tailored answers European Cross Border Quality Assurance Program On-the-job training for expert teams in all languages Expert Advice as part of ENCE-CF-LAM-LTX…

29 Thank you very much for your attention