Principles for Accessing Publicly-Funded Data for Health Research

This short submission responds to the National Health and Medical Research Council (NHMRC) targeted consultation, held in December 2014, on its draft Principles for Accessing Publicly-Funded Data for Health Research. Research Australia maintains that much greater value comes from linking two or more datasets than from individual datasets, and that the draft does too little to support this. It recommends adding to Principle 1 a statement that data should be collected, structured and stored to optimise future linkage, and expanding Principle 2 so that data custodians endeavour to supply datasets in formats that allow linking with other specified datasets, since custodians are often best or solely placed to prepare them. It also recommends consistent use of ‘publicly-funded’ rather than ‘publicly held’, a clearer glossary definition of publicly-funded data covering data wholly or partly funded by any level of government, and a new definition of data custodian.