Inquiry into the My Health Records System: Response to the Senate Community Affairs References Committee Inquiry

This submission to the Senate Community Affairs References Committee inquiry into the My Health Records (MHR) system addresses several of the inquiry’s terms of reference from the perspective of a strong supporter of the system. Research Australia maintains that the MHR will improve the safety and quality of individual care and benefit the wider health system: Australia spends around $170 billion a year on health care, and the 2013 Strategic Review of Health and Medical Research estimated that lost or unnecessary tests, adverse drug reactions and preventable surgical complications account for 20–30% of health expenditure. It cites the 2016 evaluation of the opt-out trials, in which most focus group participants judged the benefits to outweigh privacy risks once the system was explained, and its own June 2018 polling showing 44% strong and 46% moderate support for researchers using de-identified medical records. It welcomes the Bill requiring a court order for third-party access by law enforcement, and notes existing protections for research use, including de-identification under the My Health Records Act 2012, the 2018 Framework to guide the Secondary Use of My Health Records System Data and the proposed National Data Commissioner. It criticises the Government’s information campaign as late and under-resourced, saying it should have begun at least 12 months before the opt-out period, used television and radio advertising and engaged clinicians more closely. It recommends a sustained, balanced campaign presenting both risks and benefits, and for greater attention to health professionals’ concerns.