Cancer registration in Greece latest news

[First issued 30 April2011, UPDATED: 4 September 2011]

The latest news, concerning cancer registration in Greece, can be found in page 12 of the 1st Newsletter of the Hellenic Center of Disease Prevention & Control or HCDPC (issue No 1, year 1, April 6, 2011).

Links to find this Newsletter:
Newsletter in English: click here (or alternatively here)
– Newsletter in Greek: click here (or alternatively here)

Other Useful links (to understand the issues bellow) as of 30 April, 2011:
HCDPC website: click here
Cancer Registry pages: click here (main) and here (office personnel etc. links)
—- Legal Framework (in Greek):
—— [UPDATE, 4 Sept 2011] for the Official Document as it is today click here (or alternatively click here for the text and a screen shot).
—— [UPDATE, 4 Sept 2011] for the Official Document as it was from September 2010 until July 2011 click here ( it contains text and screen shots).
—— For a comparison between the above two documents click here

—- Cancer Registration Form, April 2011 (in Greek): click here (or alternatively here with screen shots)
—- Cancer Registration Forms used in 1990, 2008 and 2010 (in Greek) and the English translation: click here

In the short description of cancer registration activity in Greece of the above Newsletter (pages 12-13), we read:

——————————————————–
The Hellenic Cancer Registry

Cancer remains a major public health problem and is one of the leading causes of death in Greece and worldwide. According to the most recent estimates from the Globocan Project of the International Agency for Research on Cancer, approximately 37,000 new cases are diagnosed in Greece each year and there are 27,000 cancer deaths annually [1]. It is estimated that 3.4 million new cancer cases will be diagnosed in Europe by 2020.

Considering the enormous toll that  …… For the FULL TEXT click here (opens in a new window)

Evangelia Tzala, Department of Education and Head of the Cancer Registry
——————————————————–

However, the text above as well as the Cancer Registry web-pages have some interesting points that need to be tackled.
[Please note that most of the documents for download are in Greek and therefore assistance may be required]

(A) Cancer Registration Form
By examining the registration form that is used nowadays (see the links above – English translation) it is easy to conclude that this form does not conform to the ENCR minimum data-set requirements and it is useless for cancer registration (not suitable for geographical studies, for follow-up etc. – see ENCR data set recommendations here).
Other points, regarding this cancer registration form and its method of postage/collection, are several data protection and confidentiality issues that are raised (there is no codification of patient ID, main collection by post, etc).
In fact, this cancer registration form as well as its “mechanism” are both the same that were used since 1990 (i.e. the same that contributed to the registration-failure). Hence, they are useless and the data that will be gathered will be of limited value (if any).
[It must be noted here that since 1990 there were two (legally) different cancer registration mechanisms established in Greece (Hellenic CR in 1988 and National CR in 2003). For reasons that are unknown yet, but under investigation, they both used the same registration form although they shouldn’t. This is why they are often confused]
*

(B) Controversies or what?
(B.1.) From the above article we are informed that, since June 2008, a huge operation takes and/or took place at HCDCP (or KEELPNO).
This operation concerns a) a retrospective registration of all cancer cases reported in the period 1st January 2007 until June 2008 and b) a regular registration of the cases reported until today.
From the data provided it is not difficult to estimate that within this period of 4 years and 4 months (1.1.2007 until today) approximately 45-48,000 cancer cases are recorded (i.e. 30% of 37,000 cases per year multiplied by 4.33 years).
Considering that the data gathered are certainly useless and that this operation went too long, the questions raised are:
How long will it take them to understand the reporting mechanism and to identify any difficulties in the registration system?
– How long will it take them to understand, that this operation does not lead anywhere?
– How long will it take them to understand, that it would be more easy and less costly to examine the useless cancer registration form and the other existing facts (including interviews with the old staff) instead of spending so much effort, time and money?
In which other country of Europe or of the world took ever place such a huge operation merely “to gain an understanding of the reporting mechanism and to identify any difficulties in the registration system”?
– In other words, what is the reason or the reasons for keeping this mechanism alive? Isn’t it self-evident that so many physicians, who are expecting the results from their contribution, will be frustrated at the end of the day?
– At least, why they didn’t add any other variables to the registration form (apart from cancer stage variable added in 2010)?
What do their EUROCHIP partners say about this situation and what are their responsibilities?    [Note: let it not be said that EUROCHIP weren’t warned on the situation, fortunately there is written evidence since 2009 (and before)]
– Where is the pilot registration system that is mentioned by EUROCHIP-3 in its Interim Report (click here, see page 12).
– In fact, where are the plans and the results?
*

[Section B.1.a was added the 1st May 2011]
(B.1.a) Incidentally, while talking about the plans, we read in the above article that: “According to international standards and practice, this (i.e. the development and operation of the cancer registry) will include collection of the required data using two reporting mechanisms”.
It is difficult to the unaware to understand the meaning of the use of two reporting mechanisms. Perhaps it is even more difficult to understand the need for the development of two systems when there was not even one.
Dear EUROCHIP partners (since you have the appropriate knowledge), which are these international standards and practice that require the use of two reporting mechanisms? Where one can find them? In which plans or documents were they mentioned before and when? The training of the operators is common for the two mechanisms or separate?
Eventually, where are the plans for the development of a population-based National Cancer Registry in Greece? How have they changed over time and (if yes) for what reason? Who pays for all this?
*

(B.2.) From the above article we are informed that “no electronic registration occurred between 1994 and 2008”.
This is astonishing! This is to say that the only work that was performed for 14 years in the two (legally) different cancer registration mechanisms was the storage of useless paper records!
However, let’s bypass the issue of 14 years hibernation (it is nonsense to make it more complex for now).
Taking for granted that an old computer program and its database (constructed in 1990 and not in operation since 1994) are not suitable for contemporary computers, the question is: “how did they manage both the retrospective and the regular registration”?
– Did they use the 1994 computer and computer-program?
– Did they buy or constructed a new one? And if yes, at what cost? (Certainly, “who was the constructor” and “how long did it take to make it work” are 2 more questions of interest).
– Was it wise to remake an old program –adapted to a useless registration form- merely “to gain an understanding of the reporting mechanism and to identify any difficulties in the registration system”?
*

(B.3.) In the above article we read “It is worth noting that the notification system is passive, whereby reporting is on a voluntary basis by physicians in pathology laboratories and clinics and departments”.
However, in the document entitled “Legal Framework” (see above the “Other useful links”) it is stated that the notification is obligatory according to Article 12 of Law 3941/1959 (see 3d paragraph of the “Legal Framework”).
Which is true? Isn’t it controversial?
*

(C) Where is the License from the Data Protection Authority?
The most important issue that I must reveal is that, so far, the Cancer Registry did not have an approved License from the Data Protection Authority of Greece.
In fact, the Data Protection Authority replied in written to my relevant requests and revealed that the Hellenic Center for Disease Control and Prevention (HCDCP) applied in June 17, 2009 for a License (i.e. one year after regular operation!) but the application was still pending on the 21 March 2011 (or until the beginning of April, according to oral communication).
The most interesting “controversy” is that in the document entitled “Legal Framework” (see above) it is stated twice that the National Cancer Registry is licensed by the Data Protection Authority! This is really very serious and it has been screen-captured and reported to the authorities far prior the 21st March 2011.
References:
1. Data Protection Authority reply (in Greek), 4 February 2011 (click here)
2. Data Protection Authority reply (in Greek), 21 March 2011 (click here)

[UPDATE, 4 September 2011): As mentioned above (in section “Other Useful links”), the Official Document that contained the “Legal Framework” (under which the cancer registry operates) has been changed.  From the above Data Protection Authority’s replies and from the comparison of the two documents (see here) it is clear that:
a) The Cancer Registry operated and (obviously) still operates without any lisence from the Data Protection Authority.
b) Both, the Hellenic Center of Disease Prevention & Control and the Head of the Cancer Registry, pretended that they had a lisence for the operation of the Cancer Registry for more than 10 months, and therefore they are liable for misleading the scientific community as well as the people who visited the Cancer Registry’s web-pages.

***

Certainly, there are many more questions to ask and other points to tackle. Hopefully, they will be issued in due time.

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  1. […] Cancer registration in Greece latest news […]

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