The Productivity Commission (Commission) has released its long awaited final report into Data Availability Use (Report). As we recently reported, the Commission’s Report contains a number of sweeping recommendations geared towards shifting attitudes and changing complex legal frameworks in order to promote the easier sharing of data held by both the private and public sectors.
In line with its draft report, the Commission used the health sector as an example to illustrate the structural barriers and distrust about data use and sharing currently prevalent within certain industry sectors, all of which prevent the easy sharing of data for both individual and national benefits. The Commission noted:
The implications of this situation are significant. At the individual level, patients are required in many cases to act as information conduits between the various health care providers they see. Inadequate information can lead to errors in treating patients… At the system level, inefficient collection and sharing leads to data gaps and unnecessary expenditure…
What are the issues?
The Commission identified a number of complex structural and legal issues which contribute to the current state of play in the health sector. In our view, there are two key overarching concerns:
- The first is the siloing of health information within the various organs of the healthcare sector, without appropriate systems and policies to facilitate the sharing of health. This siloing causes a number of issues in the patient care context, such as decreased efficiency, duplication of services – particularly radiology and pathology – which in turn drives unnecessary costs into the system, and may lead to a lack of fully informed healthcare at an episodic level. The more information that is available to health service providers, so the argument goes, the greater the chance of more complete, accurate and efficient healthcare.
- The second issue concerns the quality and availability of national datasets for research and policy development purposes. The quality of datasets appears to be insufficient because primary care (ie care provided outside of the hospital environment) datasets are not linked into national health data sets, meaning that our national health datasets consist primarily of data generated by public hospitals. Certain primary care datasets and “health identifiers” are published (such as certain Medicare datasets), but this is not done in a coordinated way and the datasets may not contain valuable information, such as patient outcomes. This valuable information generally resides in the private sector and so is an untapped resource unavailable for public researchers. To compound matters, national data sets are generally difficult for researchers to obtain due to various privacy constraints. When combined, these factors create a situation where researchers and policy makers simply do not have timely access to quality data which could be analysed to improve healthcare service delivery and health outcomes generally.
New consumer rights to access data
The Commission recommends a new “Comprehensive Right” for consumers to give consumers greater control over consumer data. This will include express rights for consumers to access data that third parties hold about them and also require that data to be provided to third parties. Such a right could allow a patient to direct a healthcare provider to provide the complete medical record not only to the patient but to another health service provider or to an independent operator of an aggregated repository of data.
The Commission proposes that the data would need to be made available in “machine readable form” but that an industry agreement could determine the exact format and scope of the data that would capable of transmission. This will require a degree of industry cooperation to agree a suitable data sharing system, which may present challenges in the healthcare sector, but the Australian Digital Health Authority could play a key role in facilitating the agreement, as it is already tasked with leading the national e-health transformation initiative.
The Comprehensive Right will also allow patients unfettered access to their own data. Currently, access to health records is governed by differing legislation, depending on who the holder of the information is (e.g. whether in the private or public health system). The extent to which the proposed Comprehensive Right may overlap with the My Health Record initiative remains to be seen.
The Commission considers there are a number of datasets that exist, or could exist, that will be of national interest. Some of the Commission’s key recommendations are the creation of a National Data Custodian who would oversee the declaration of national interest datasets (NIDs) comprising mainly of public, but in some “exceptional cases” private, datasets. This regime would be managed under a new piece of legislation coined the Data Sharing and Release Act.
In addition to establishing a Data Custodian, this legislation would establish sector-specific Accredited Release Authorities tasked with various activities including the development and integration of datasets drawn from across a sector and jurisdictions and approving trusted users of more sensitive data. The Report specifically identifies the Australian Institute of Health and Welfare (AIHW) as a working model for an Accredited Release Authority.
This focus on the value to the overall economy of data use and availability and the importance of health datasets in particular suggests that the government may seek to expand the remit of AIHW to open up access to existing health information (including potentially to information generated within the private health system) for public research purposes. This could in turn help health researchers and others in:
- identifying the causes of disease, the prevalence of risk factors and identifying populations at risk;
- protecting public safety, especially with regard to infectious disease, but also in relation to prescription medicines, medical devices and environmental hazards;
- needs assessment, and monitoring and evaluation of health services, with a view to optimising the performance of healthcare systems; and
- improving the quality and safety of care in hospitals, practitioner’s offices, clinics and other healthcare settings.
The Commission’s key recommendations are bold and, if implemented, would represent a radical shift in the way that data is treated within the health sector and the broader economy. It will be fascinating to see the degree to which the government engages with and accepts these recommendations, and whether it is successful in putting the proposed data revolution into effect.