access to information & cross border care as exemplified by the ecorn-cf project april 28, 2009...

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

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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

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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

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After translation into English QA is sent to Central

ARCHIVE for quality check

Central English Archive ≠ English

local expert advice!

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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

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After quality check:

QA (English version)

published in Central Archive

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Access to the local expert advice in different languages

Access to Central English Archive

www.ecorn-cf.eu

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Example:

DUTCH local expert advice

Example:

GREEK local expert advice

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

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Access to information

as exemplifiedby ECORN-CF

Back to our topic...

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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.

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• 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.

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• 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...

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• 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?


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• 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.

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• 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.

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• 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.

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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.

???

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???

You do not have a cluehow to merge

these three data sources.

What would you prefer?

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• 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...

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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?


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Cross Border Care

as exemplifiedby ECORN-CF

A few more words about...

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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.

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• 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

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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

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• 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).

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• 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

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• 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).

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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…

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Thank you

very much

for your attention

access to information & cross border care as exemplified by the ecorn-cf project april 28, 2009...

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