The VASCUNET Manifesto on Data Privacy Compliant Real World Evidence
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The VASCUNET Manifesto on Data Privacy Compliant Real World Evidence. / Behrendt, Christian-Alexander; Müller, Tobias; Venermo, Maarit; Altreuther, Martin; Szeberin, Zoltán; Boyle, Jonathan R; Mani, Kevin.
In: EUR J VASC ENDOVASC, Vol. 60, No. 6, 12.2020, p. 942-943.Research output: SCORING: Contribution to journal › Other (editorial matter etc.) › Research
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TY - JOUR
T1 - The VASCUNET Manifesto on Data Privacy Compliant Real World Evidence
AU - Behrendt, Christian-Alexander
AU - Müller, Tobias
AU - Venermo, Maarit
AU - Altreuther, Martin
AU - Szeberin, Zoltán
AU - Boyle, Jonathan R
AU - Mani, Kevin
N1 - Editorial Material
PY - 2020/12
Y1 - 2020/12
N2 - Between 1997 and today, the history of the VASCUNET collaboration 1 has been accompanied by various milestones of the digital revolution. In 1998, when only 1% of European inhabitants used the internet, a company known for the most popular search engine was founded in a garage in California, USA. Subsequently, the increasing data exchange between the European Union (EU) and the US led to the “Safe Harbour” agreement in 2000. While in 1993 only 3% of the world's information was stored digitally, this proportion increased to 96% in 2007. 2 Shortly afterwards, in 2008, the catchphrase “big data” was introduced to the biomedical community, 3 and only four years later, it wasn't surgeon but data scientist that was voted “the sexiest job of the 21st century”. 4 These rapid developments led to both opportunities and challenges for real world research using clinical and administrative registries. Research groups proved that the concept of data privacy is a complex and fragile construct. 5 Recently, the “EU–US Privacy Shield” agreement, a continuation of the “Safe Harbour”, agreement allowing transatlantic data transfer, collapsed over a decision of the European Court of Justice, creating a legislative vacuum in this field.
AB - Between 1997 and today, the history of the VASCUNET collaboration 1 has been accompanied by various milestones of the digital revolution. In 1998, when only 1% of European inhabitants used the internet, a company known for the most popular search engine was founded in a garage in California, USA. Subsequently, the increasing data exchange between the European Union (EU) and the US led to the “Safe Harbour” agreement in 2000. While in 1993 only 3% of the world's information was stored digitally, this proportion increased to 96% in 2007. 2 Shortly afterwards, in 2008, the catchphrase “big data” was introduced to the biomedical community, 3 and only four years later, it wasn't surgeon but data scientist that was voted “the sexiest job of the 21st century”. 4 These rapid developments led to both opportunities and challenges for real world research using clinical and administrative registries. Research groups proved that the concept of data privacy is a complex and fragile construct. 5 Recently, the “EU–US Privacy Shield” agreement, a continuation of the “Safe Harbour”, agreement allowing transatlantic data transfer, collapsed over a decision of the European Court of Justice, creating a legislative vacuum in this field.
KW - Confidentiality/legislation & jurisprudence
KW - European Union
KW - Humans
KW - Registries
KW - Vascular Surgical Procedures
U2 - 10.1016/j.ejvs.2020.08.036
DO - 10.1016/j.ejvs.2020.08.036
M3 - Other (editorial matter etc.)
C2 - 32952035
VL - 60
SP - 942
EP - 943
JO - EUR J VASC ENDOVASC
JF - EUR J VASC ENDOVASC
SN - 1078-5884
IS - 6
ER -