Public Health Wales
PHW IGC 13.13
Proposed changes to the
Personal Data Protection:
processing and free movement
of data (General Data
Protection Regulation) –
2012/0010 (COD)
Author: Mark Dickinson, Executive Director of Planning and Performance
Date: 09 September 2013
Version: 1
Purpose and Summary of Document:
The European Parliament are proposing changes to the Personal Data
Protection: processing and free movement of data (General Data
Protection Regulation) – 2012/0010 (COD). The proposed changes have
the potential to have a profound impact on public health intelligence and
research and will adversely impact on Public Health Wales’ understanding
of the health the population in Wales and across Europe.
The attached letter has been submitted to a number of MEPs.
Sponsoring Executive Director: Mark Dickinson, Executive Director of
Planning and Performance
Who will present: Mark Dickinson, Executive Director of Planning and
Performance
Documents attached: Letter to MEPs
Date of Committee meeting: 18 September 2013
Committee/Groups that have received or considered this paper:
N/A
Please state of the paper is for:
Discussion
Decision
Information
X
Date: 09 September 2013
Version: 1
Page: 1 of 5
Public Health Wales
PHW IGC 13.13
Dear
Proposed changes to the Personal Data Protection: processing and free
movement of data (General Data Protection Regulation) – 2012/0010
(COD)
I am writing to you to prevent the potential catastrophic impact on public health
of the proposed changes to the Person Personal data protection: processing and
free movement of data (General Data Protection Regulation) - 2012/0010(COD).
If implemented, without appropriate safeguards to protect public health
activities, the Regulation will have a profound impact on public health
intelligence and research and will adversely impact on our understanding of the
health the population in Wales and across Europe. This in turn will prevent action
to protect and improve public health. I would like to seek assurances that you
will do everything in your power to prevent this.
European professional colleagues in the field of health intelligence and research
first became concerned about proposed changes to European data protection
regulations after the release of the draft directive by the European Commission
in January 2012.
The assessment of the European-wide health professional community was that
the language in the proposal potentially restricted the ability of Cancer Registries
and other health data organisations to operate.
The main reason for this was ambiguity over the need to collect specific patient
consent for each new analysis. Even though there were protections for health
research within the Commission proposals, it was the collective understanding of
the health research and intelligence community that these protections were not
strong enough.
Following this, we were concerned by the release of the report of the LIBE
Committee (PE 501.927v04-00). The report failed to strengthen protections for
public health research and in many cases removed protections completely.
We note that members of the LIBE Committee tabled a substantial number of
amendments at a recent meeting (4 – 6 March 2013). Many of these reinserted
language meaning health registries and research databases can continue to work
with added support.
In Wales we wish to see these amendments supported to ensure that we can
continue to improve and protect the health of the population through health
surveillance, monitoring and research. This is profoundly important if we are to
continue to alert to potential rises, for example, in cases of cancer or congenital
anomalies.
The recent measles outbreak in Wales would be considerably more difficult to
understand and target action against if we did not have basic information on
cases readily to hand.
Date: 09 September 2013
Version: 1
Page: 2 of 5
Public Health Wales
PHW IGC 13.13
The consequences of a European Data Protection Regulation that inhibits health
research and intelligence are potentially catastrophic. I am attaching a briefing
paper from two international cancer associations that clearly outline the risks. It
appears that the effects the proposals will have on this area are an unintended
outcome. However I am concerned that through omission, or the seeking of
another philosophical approach to personal data, this vital area of work is
threatened.
I am writing to you as Chair of Public Health Wales, an NHS trust responsible for
the collection and analysis of key health intelligence data in Wales to guide and
underpin public health action. Teams responsible for this within Public Health
Wales include health protection teams (providing surveillance on infectious
diseases), the Observatory, the Welsh Cancer, Intelligence and Surveillance Unit
and the Congenital Anomaly Register and Information Service for Wales.
Please do not hesitate to contact me if you would like further information to
support our approach as set out in this letter. I look forward to hearing from
you.
Yours sincerely,
Professor Sir Mansel Aylward CB
Chair
Public Health Wales
Date: 09 September 2013
Version: 1
Page: 3 of 5
Public Health Wales
PHW IGC 13.13
To be sent to:
Name
Country/Party
Juan
Fernand
o Lopez
Aguilar
Spain
Progressive
Alliance of
Socialists and
Democrats in
the EU
Email
juanfernando.lopezaguilar@europarl.europa.e
u
Chair
Dimitrios
Droutsas
Greece
Progressive
Alliance of
Socialists and
Democrats in
the EU
Dimitrios.droutsas@europarl.europa.eu
Rapporteur
Jan
Philipp
Albrecht
Germany
Greens/Europea
n Free Alliance
jan.albrecht@europarl.europa.eu
Rapporteur
Sophia
in’t Veld
Netherlands
Alliance of
Liberals and
Democrats in
Europe
Timothy
Kikhope
UK
Conservatives
and Reformists
Group
Axel
Voss
Germany
European
People’s Party
Date: 09 September 2013
sophie.intveld@europarl.europa.eu
timothy.kirkhope@europarl.europa.eu
axel.voss@europarl.europa.eu
Version: 1
Postal
address
Europees
Parlement
Wietzstraa
t
Altiero
Spinelli
10G317
B-1047
Brussels
Europees
Parlement
Wietzstraa
t
Altiero
Spinelli
10G317
B-1047
Brussels
Europees
Parlement
Wietzstraa
t
Altiero
Spinelli
10G317
B-1047
Brussels
Europees
Parlement
Wietzstraa
t
Altiero
Spinelli
10G317
B-1047
Brussels
Europees
Parlement
Wietzstraa
t
Altiero
Spinelli
10G317
B-1047
Brussels
Europees
Parlement
Wietzstraa
Page: 4 of 5
Public Health Wales
PHW IGC 13.13
(Christian
Democrats)
Cornelia
Ernst
Germany
Confederal
Group of the
European United
Left
Date: 09 September 2013
cornelia.ernst@europarl.europa.eu
Version: 1
t
Altiero
Spinelli
10G317
B-1047
Brussels
Europees
Parlement
Wietzstraa
t
Altiero
Spinelli
10G317
B-1047
Brussels
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