DataWell: Public Involvement in the Development of a Federated Platform for Shared Patient Records in Greater Manchester, U.K.

摘要

Sharing personal health data for direct care, health improvement, planning and research is recognised as important to improving the quality and safety of care. However, the complexities of sharing data, including technology, information governance and consent issues, means that many projects have difficulty communicating with the public about why they wish to share data, or what the benefits might be. Great Manchester Academic Health Science Network has established a Public Experience Group to help co-design the requirements for a health information exchange, called DataWell, across over 30 health and care organisations in Greater Manchester. This group has allowed the programme to uniquely respond to questions of how consent and data sharing should work with DataWell for direct care, as well as exploring other uses of the data, including planning and research.