Although health care organizations have internal policies defined for information governance, there is a significant lack of practical tools and intuitive guidance about the use of data for research and modeling. Raw data are commonly anonymized to be used for research purposes, with risk assessment for reidentification and utility. Identifiable personal and sensitive information must be sufficiently anonymized. Any other use of the data requires thoughtful considerations of the legal context and direct patient consent. For health care providers, legal use of the electronic health record (EHR) is permitted only in clinical care cases. Recent regulations enforce the need for a clear legal basis for collecting, processing, and sharing data, for example, the European Union's General Data Protection Regulation (2016) and the United Kingdom's Data Protection Act (2018). Using data science in digital health raises significant challenges regarding data privacy, transparency, and trustworthiness.
BackgroundData science offers an unparalleled opportunity to identify new insights into many aspects of human life with recent advances in health care.
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