Patients’ and members of the public’s wishes regarding transparency in the context of secondary use of health data: scoping review

HIGHLIGHTS

SUMMARY

    For individuals to be able to weigh in on the use of data about them, they at least need to be aware that data generated for a primary reason (eg, during a consultation with a physician) have values above and beyond the specific context for which they were created and can therefore be used for secondary goals such as research projects or systems policy research. While the potential of secondary use of health data for research purposes is seen as promising to many stakeholders in the academic and health care worlds, trust regarding data . . .

     

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