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Table 1 Challenges and action points for data sharing initiatives resulting from prespecified conditions

From: Responsible data sharing in a big data-driven translational research platform: lessons learned

ConditionChallengeAction point
Data sharing is only allowed for …
 Scientific researchWhat kinds of questions, areas of research and motives are acceptable?Establish the scope of scientific research questions that may be addressed
 In anonymized or coded formIn case full anonymity cannot be guaranteed, can data still be shared? If yes, on what grounds and how?Establish how to deal with varying levels of de-identification
 After approval from a review committee and with acceptance of security measuresWhen and how should review committees operate in the context of Big Data-driven research platforms?Establish the role and responsibilities of review committees
 In compliance with applicable laws, rules and regulationsLaws, rules and regulations may offer different interpretations of data sharingEstablish what laws, rules and regulations mean by data sharing
 –Documents may permit “conditional data sharing with third parties” without specifying these conditionsEstablish how to deal with datasets that do not have a system in place for (international) data sharing