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EUROCOURSE recipe for cancer surveillance by visible population-based cancer RegisTrees® in Europe: From roots to fruits

In de periode 2009-2013 was Evert-Ben van Veen betrokken bij het EUROCOURSE project. Nu is ook het overzichtsartikel met de voornaamste resultaten van het project verschenen. Een belangrijk document, ook voor de discussie rond de AVG/GDPR of de Gedragscode Gezondheidsonderzoek.
It was published online in the European Journal of Cancer in April 2015.

Secondary use of health data at the CPDP conference

Evert-Ben van Veen, also with and through FEDERA/COREON, has long argued for a reasoned and pragmatic approach to the secondary use of Health Data in scientific research. Our voice is small, but in January 2015 we had the opportunity to present a panel at the international Computer, Privacy & Data Protection conference in Brussels. With support from the Danish Cancer Society, we collected speakers from the Netherlands, Sweden, Germany, Belgium and Switzerland.

Brussels is at the heart of European policy making and our audience there was diverse and influential. With the future details of the GDPR still to be finalised, this opportunity to lobby for a balanced regulation, taking solidarity into account instead of only the right to privacy, is crucial. We hope we conveyed our message there, being: completely anonymous data has no real research value, and many patients (as opposed to the average man in the street) want the research which will further identify and help cure their particular illness.

Evert-Ben van Veen’s presentation can be downloaded here.

GDPR - latest news and comments

On October 21st the Committee on Civil Liberties, Justice and Home Affairs (LIBE) finally passed an amended proposal for a Regulation of the European Parliament and of the Council on the protection of individuals with regard to the processing of personal data and on the free movement of such data (General Data Protection Regulation). The documents relating to this meeting can be found here on the European Parliament website, and the texts of these revised proposals can be found in the following PDFs: articles 1-29 and articles 30-91.

Evert-Ben van Veen has penned a commentary on these revised proposals on behalf of several Dutch research organisations, and this can be downloaded here.

The future of these proposals in their present form is now very much in doubt. The debate on the electronic eavesdropping scandals has somewhat eclipsed the discussion on the GDPR. Though that debate has speeded up the process in LIBE, many governments still have numerous reservations concerning the GDPR. The Council is now aiming to adopt its version in 2015. After that, a new round in the European Parliament must follow, based on a compromise tekst by the Commission. The parliamentary elections next year will yield new faces in key positions (Commissioners, rapporteurs) who may also wish to re-vamp the whole proposal.

Conceivably, this delay will enable both researchers and patient organisations to consolidate and strengthen their lobby ahead of the renewed discussions in a year or so’s time.

GDPR facts and comments: LIBE and research

Upon request by COREON and some European epidemiological researchers Evert-Ben van Veen analysed the report of the committee on civil liberties, justice and home affairs (LIBE) of the European Parliament regarding the coming European data Protection Regulation. The conclusions of the detailed analysis are that LIBE would have disastrous effects on observational research in Europe, even more so than worried researchers had predicted already.
The report can be downloaded here.

GDPR facts and comments: LIBE and research

Working till the small hours of the night, as there were the needs of paying clients as well, Evert-Ben van Veen finished the report on LIBE’s proposed changes to the General Data Protection Regulation. See under publications. The challenges were, amongst other things, to summarise LIBE’s many pages and sometimes confusing texts into a readable format without omitting anything important and, next to criticism, to indicate briefly what is at present the ethical and practical basis for much public health research in Europe which couldn’t continue under LIBE.

On the 15th of March MedLawconsult will organise a seminar for researchers and patient organisations where the GDPR will be further explained and initiatives to save public health research in Europe will be discussed. Professor Paul van der Maas will chair the seminar.

New medical devices regulation

On 29th January 2013, gave a short presentation at the seminar on the new medical devices regulation. The seminar was organised by TILEC and Lexxion, and Evert-Ben van Veen’s subject was about the relation between PMS and Data Protection. The presentation can be downloaded here.
All the speakers at the seminar were highly critical of the draft General Data Protection Regulation.


On the 24th of November at the EUROCOURSE summit in Brussels Evert-Ben van Veen gave a presentation of the main aspects of his research done for WP 2 of EUROCOURSE and his drive behind such legal research. Several of his main themes came back in those 15 minutes, such as the distinction between interventional and observational research, the prevailing emphasis on autonomy in academic medical law and solidarity and citizenship as counterbalancing values and good research governance.

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