THE creation of a national data linkage resource will improve health services and policy, as well as providing essential information on comparative effectiveness of treatment strategies, according to the authors of a Perspective published today by the Medical Journal of Australia.
The National Integrated Health Services Information (NIHSI) Analysis Asset was approved by the Australian Health Ministers Advisory Council and will be owned by the Australian Institute of Health and Welfare as well as the Commonwealth Department of Health, and state and territory health authorities. It will contain anonymised data from participating states and territories from 2010-2011 onwards.
Authors from UNSW Sydney, University of Auckland, Curtin University and Flinders University, led by Dr Tom Briffa from the University of Western Australia, wrote that the importance of national data linkage could not be overstated.
“[It] paves the way for improving health services and policy in Australia,” they wrote.
“Better access to existing health data sources, together with established quality clinical registries and major cohorts, is central to improving population health.
“For high-cost, high-risk and high-volume health care activities in cardiovascular and other chronic conditions, access to these data would provide essential information on comparative effectiveness of treatment strategies. Both funders and commissioners of health care would be able to target limited resources to those areas where the greatest long-term benefit might be obtained.”
A demonstration project as proof of concept of the NIHSI used the anonymised data from public hospital admissions, emergency services, the Medicare Benefits Schedule, the Pharmaceutical Benefits Scheme and the National Death Index, to document the patient journey from admission to and discharge from hospital, subsequent care in the community, and survival status over time, Briffa and colleagues wrote.
The NIHSI itself will in time add data from admissions to private hospitals, together with outpatient and residential aged care.
There were challenges to making the NIHSI a trusted and safe repository and resource, however, they wrote.
“Australians will expect the highest level of governance, management and stewardship of the data, in addition to clarity and accountability as to the purpose of the collection and its use,” Briffa and colleagues wrote. “More importantly, individuals will want assurance that all data made available for analysis are anonymised and that rigorous standards to protect personal privacy and data confidentiality are established.
“For the NIHSI Analysis Asset to yield optimal return on investment through improving health services and policy, it will require the coverage of both public and private health sectors, processes for data linkage to additional datasets such as clinical quality registries and clinical trials, a streamlined and cost effective mechanism for access to and use of the data, and the development of “trusted user” status based on the ‘five safes’ principles supported by training and accreditation.
“The advent of NIHSI Analysis Asset for public good will require exceptional leadership and comprehensive public discourse,” they concluded.
- Cate Swannell