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Data governance concerns some questions in this domain.
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That includes proper governance at the architectural level with IT and separate data governance in the business, not in IT.
The respondents reported that prior informed consent would be needed (68%), less than half felt their institution would approve data transfer (43%), and there would be ethics/information governance concerns (65%) using a third party to host data.
This paper is mainly concerned with the data governance aspect.
Complexity also becomes evident when considering the scope of the issues and questions reported on, which is an evolving scope that spans systems design and data governance as well as ethical and privacy concerns.
However there are still few examples of where research data are integrated with patient clinical data [ 7] and there are concerns around meeting privacy, regulatory, and data governance requirements when using EHRs for research [ 8, 9].
Returning data to the research sponsor would need prior informed consent (78%), less than half felt their institution would approve data transfer (41%), and the vast majority suggested there would be ethics/information governance concerns (85%).
Since many institutions are highly siloed, and having a diverse data stewardship, issues of data governance and the capability to have the right access to relevant data are still regarded as a primary concern.
A data democracy implies data governance by the people, for the people and with their consent.
The problem of procedure over substance runs throughout corporate governance concerns.
Roger Barker, director of corporate governance, said: "Mike Ashley is to be congratulated for recognising the governance concerns associated with this pay plan.
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Justyna Jupowicz-Kozak
CEO of Professional Science Editing for Scientists @ prosciediting.com