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Medical Research and Data Sharing - How Open Can We Be?

Presenter 1
Renate Gertz
AHRC Centre, School of Law, University of Edinburgh

Scotland intends to introduce an Electronic Health Record in the near future to provide an open data system throughout the health service to improve access to a current record and prevent the multiple-blood-test-syndrome due to lack of communication between health care providers. This vision, however, is accompanied by various legal and ethical problems. One such problem is the question of access. While the use of open data within the health service offers considerable advantages, issues such as confidentiality need to be taken into account. Many patients still expect the traditional model of care with doctor-patient confidentiality, however, this is hard to equate with the reality of extended health care teams where the need for data sharing and open access to patient data has grown considerably. This paper will provide an overview of the problems of how open the data sharing can, be using several scenarios to provide examples and highlight some of the options being considered.

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