Principles for Accessing and Using Publicly Funded Data for Health Research

Researchers and data custodians often have different perspectives and priorities in data sharing.It is important to recognise that, whilst the data has value in its potential to improve health outcomes, it may comprise information of individuals who expect that their privacy will be protected. Priorities for custodians include adherence to legislation, privacy protection, ensuring that the suitability and limitations of the data for specific research applications are understood as well as the need to meet internal work demands and resource constraints. The Principles are a guide for researchers who are requesting access to wholly or partially publicly funded datasets, and for organisations that hold them. These Principles augment existing ethics and grant review practices as well as internal custodian processes.
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