Managing personal data responsibly and ethically in healthcare projects

Sharing health data in ethical and responsible ways is beneficial for stakeholders and for society more generally. For instance, data shared from genome sequencing of COVID-19 has helped identify new variants and has supported researchers who are testing and creating vaccines. In direct care settings, the sharing of primary care data between healthcare professions enables continuity of care for patients. For example, a pharmacist is able to better understand the potential interactions between medications being provided to a patient if they have a full list of other medications that the patient is taking, including those that may not be directly related to the current episode of care. However, to realise these benefits it is important to understand and manage the risks involved in accessing, using and sharing personal data and to avoid harmful impacts on individuals and communities.

This play defines what personal data is, and will help you to understand the role of data protection regulations in supporting use of personal data in ways that avoid harmful impacts. It provides guidance on both the potential negative and positive impacts of sharing personal data, and concludes with some practical steps to help manage risks.