Big Questions about Big Data
About the Big Questions about Big Data Event
29 May 2019
On May 29, 2019, the Institute of Health Economics (IHE), the Network of Alberta Health Economists (NOAHE) and the Alberta Real World Evidence Consortium (Alberta RWE) were delighted to host Prof Annette Braunack-Mayer of the University of Wollongong, Australia, who discussed the social and ethical issues related to the collection and use of real world data to inform private and public health and social care decisions. Prof Braunack-Mayer described some of her current projects about these issues and the challenges perceived for the future and the policy environment around data linkage.
Abstract: Until fairly recently, the only “big data” applications we saw were from established data linkage groups that had solid policies and procedures for ensuring ethical conduct. Increasingly, we are seeing a range of new developments – researchers working outside those large groups who want to link their own small research or clinical data with public population datasets and private sector clinical research organizations (CROs), pharmaceutical companies, and device manufacturers, who in turn want to link their own data with other public and private population datasets. Outside of the health sector, educational and social care organizations are also discovering that data linkage can facilitate rigorous evaluations of their own programs.