Access to Information & Cross Border Care As exemplified by the ECORN-CF project April 28, 2009 by...
-
Upload
laila-stears -
Category
Documents
-
view
214 -
download
0
Transcript of Access to Information & Cross Border Care As exemplified by the ECORN-CF project April 28, 2009 by...
![Page 1: Access to Information & Cross Border Care As exemplified by the ECORN-CF project April 28, 2009 by Annette Pfalz.](https://reader030.fdocuments.us/reader030/viewer/2022032611/56649cb45503460f949784af/html5/thumbnails/1.jpg)
Access to Information&
Cross Border Care
As exemplified by the
ECORN-CF project
April 28, 2009 by Annette Pfalz
![Page 2: Access to Information & Cross Border Care As exemplified by the ECORN-CF project April 28, 2009 by Annette Pfalz.](https://reader030.fdocuments.us/reader030/viewer/2022032611/56649cb45503460f949784af/html5/thumbnails/2.jpg)
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
![Page 3: Access to Information & Cross Border Care As exemplified by the ECORN-CF project April 28, 2009 by Annette Pfalz.](https://reader030.fdocuments.us/reader030/viewer/2022032611/56649cb45503460f949784af/html5/thumbnails/3.jpg)
3
ECORN-CFwww.ecorn-cf.eu
• 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
![Page 4: Access to Information & Cross Border Care As exemplified by the ECORN-CF project April 28, 2009 by Annette Pfalz.](https://reader030.fdocuments.us/reader030/viewer/2022032611/56649cb45503460f949784af/html5/thumbnails/4.jpg)
4
The web-based system of ECORN-CF
Question asked on www.ecorn-cf.eu ; 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
![Page 5: Access to Information & Cross Border Care As exemplified by the ECORN-CF project April 28, 2009 by Annette Pfalz.](https://reader030.fdocuments.us/reader030/viewer/2022032611/56649cb45503460f949784af/html5/thumbnails/5.jpg)
5
Access to the local expert advice in different languages
Access to Central English Archive
www.ecorn-cf.eu
![Page 6: Access to Information & Cross Border Care As exemplified by the ECORN-CF project April 28, 2009 by Annette Pfalz.](https://reader030.fdocuments.us/reader030/viewer/2022032611/56649cb45503460f949784af/html5/thumbnails/6.jpg)
6
Example:
DUTCH local expert advice
Example:
GREEK local expert advice
![Page 7: Access to Information & Cross Border Care As exemplified by the ECORN-CF project April 28, 2009 by Annette Pfalz.](https://reader030.fdocuments.us/reader030/viewer/2022032611/56649cb45503460f949784af/html5/thumbnails/7.jpg)
7
Central Archive (in English only)all answers are quality checked
![Page 8: Access to Information & Cross Border Care As exemplified by the ECORN-CF project April 28, 2009 by Annette Pfalz.](https://reader030.fdocuments.us/reader030/viewer/2022032611/56649cb45503460f949784af/html5/thumbnails/8.jpg)
8
Access to information
as exemplifiedby ECORN-CF
Back to our topic...
![Page 9: Access to Information & Cross Border Care As exemplified by the ECORN-CF project April 28, 2009 by Annette Pfalz.](https://reader030.fdocuments.us/reader030/viewer/2022032611/56649cb45503460f949784af/html5/thumbnails/9.jpg)
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.
![Page 10: Access to Information & Cross Border Care As exemplified by the ECORN-CF project April 28, 2009 by Annette Pfalz.](https://reader030.fdocuments.us/reader030/viewer/2022032611/56649cb45503460f949784af/html5/thumbnails/10.jpg)
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.
![Page 11: Access to Information & Cross Border Care As exemplified by the ECORN-CF project April 28, 2009 by Annette Pfalz.](https://reader030.fdocuments.us/reader030/viewer/2022032611/56649cb45503460f949784af/html5/thumbnails/11.jpg)
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...
![Page 12: Access to Information & Cross Border Care As exemplified by the ECORN-CF project April 28, 2009 by Annette Pfalz.](https://reader030.fdocuments.us/reader030/viewer/2022032611/56649cb45503460f949784af/html5/thumbnails/12.jpg)
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.
![Page 13: Access to Information & Cross Border Care As exemplified by the ECORN-CF project April 28, 2009 by Annette Pfalz.](https://reader030.fdocuments.us/reader030/viewer/2022032611/56649cb45503460f949784af/html5/thumbnails/13.jpg)
Additional Benefit?
Access to information & ECORN-CF
![Page 14: Access to Information & Cross Border Care As exemplified by the ECORN-CF project April 28, 2009 by Annette Pfalz.](https://reader030.fdocuments.us/reader030/viewer/2022032611/56649cb45503460f949784af/html5/thumbnails/14.jpg)
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.
![Page 15: Access to Information & Cross Border Care As exemplified by the ECORN-CF project April 28, 2009 by Annette Pfalz.](https://reader030.fdocuments.us/reader030/viewer/2022032611/56649cb45503460f949784af/html5/thumbnails/15.jpg)
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.
![Page 16: Access to Information & Cross Border Care As exemplified by the ECORN-CF project April 28, 2009 by Annette Pfalz.](https://reader030.fdocuments.us/reader030/viewer/2022032611/56649cb45503460f949784af/html5/thumbnails/16.jpg)
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.
![Page 17: Access to Information & Cross Border Care As exemplified by the ECORN-CF project April 28, 2009 by Annette Pfalz.](https://reader030.fdocuments.us/reader030/viewer/2022032611/56649cb45503460f949784af/html5/thumbnails/17.jpg)
17
Access to information & ECORN-CF
Illustration of the benefit:
Imagine you would like to send serial letters by e-mail
using an Excel sheet for the e-mail addresses and salutation
and a Word document for the rest of the e-mail
and then sending it out with Outlook.
???
![Page 18: Access to Information & Cross Border Care As exemplified by the ECORN-CF project April 28, 2009 by Annette Pfalz.](https://reader030.fdocuments.us/reader030/viewer/2022032611/56649cb45503460f949784af/html5/thumbnails/18.jpg)
18
Access to information & ECORN-CF
???
You do not have a cluehow to merge
these three data sources.
What would you prefer?
![Page 19: Access to Information & Cross Border Care As exemplified by the ECORN-CF project April 28, 2009 by Annette Pfalz.](https://reader030.fdocuments.us/reader030/viewer/2022032611/56649cb45503460f949784af/html5/thumbnails/19.jpg)
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...
![Page 20: Access to Information & Cross Border Care As exemplified by the ECORN-CF project April 28, 2009 by Annette Pfalz.](https://reader030.fdocuments.us/reader030/viewer/2022032611/56649cb45503460f949784af/html5/thumbnails/20.jpg)
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
![Page 21: Access to Information & Cross Border Care As exemplified by the ECORN-CF project April 28, 2009 by Annette Pfalz.](https://reader030.fdocuments.us/reader030/viewer/2022032611/56649cb45503460f949784af/html5/thumbnails/21.jpg)
21
Cross Border Care
as exemplifiedby ECORN-CF
A few more words about...
![Page 22: Access to Information & Cross Border Care As exemplified by the ECORN-CF project April 28, 2009 by Annette Pfalz.](https://reader030.fdocuments.us/reader030/viewer/2022032611/56649cb45503460f949784af/html5/thumbnails/22.jpg)
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.
![Page 23: Access to Information & Cross Border Care As exemplified by the ECORN-CF project April 28, 2009 by Annette Pfalz.](https://reader030.fdocuments.us/reader030/viewer/2022032611/56649cb45503460f949784af/html5/thumbnails/23.jpg)
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
![Page 24: Access to Information & Cross Border Care As exemplified by the ECORN-CF project April 28, 2009 by Annette Pfalz.](https://reader030.fdocuments.us/reader030/viewer/2022032611/56649cb45503460f949784af/html5/thumbnails/24.jpg)
24
The web-based system of ECORN-CF
Question asked on www.ecorn-cf.eu ; 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
![Page 25: Access to Information & Cross Border Care As exemplified by the ECORN-CF project April 28, 2009 by Annette Pfalz.](https://reader030.fdocuments.us/reader030/viewer/2022032611/56649cb45503460f949784af/html5/thumbnails/25.jpg)
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).
![Page 26: Access to Information & Cross Border Care As exemplified by the ECORN-CF project April 28, 2009 by Annette Pfalz.](https://reader030.fdocuments.us/reader030/viewer/2022032611/56649cb45503460f949784af/html5/thumbnails/26.jpg)
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
![Page 27: Access to Information & Cross Border Care As exemplified by the ECORN-CF project April 28, 2009 by Annette Pfalz.](https://reader030.fdocuments.us/reader030/viewer/2022032611/56649cb45503460f949784af/html5/thumbnails/27.jpg)
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).
![Page 28: Access to Information & Cross Border Care As exemplified by the ECORN-CF project April 28, 2009 by Annette Pfalz.](https://reader030.fdocuments.us/reader030/viewer/2022032611/56649cb45503460f949784af/html5/thumbnails/28.jpg)
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…
![Page 29: Access to Information & Cross Border Care As exemplified by the ECORN-CF project April 28, 2009 by Annette Pfalz.](https://reader030.fdocuments.us/reader030/viewer/2022032611/56649cb45503460f949784af/html5/thumbnails/29.jpg)
29
Thank you
very much
for your attention