Digital Health: Patients as Consumers
On 8 May 2017 the Australian Government tabled the Productivity Commission Inquiry Report into data availability and use. The Productivity Commission had been requested to undertake an inquiry into the benefits and costs of the options for increasing availability of and improving the use of public and private sector data by individuals and organisations.
The Productivity Commission makes a number of recommendations and it will be interesting to see how the Australian government will proceed in addressing how Australia can use the huge amount of digital data now generated to the benefit of all sectors of Australian society. A particular focus of the Report is on the health sector and how data from the health sector could be more widely used. The Report comments on the benefits that would flow from the use of open data not only for research and preventative health care but also on an individual basis between patient and practitioner.
For the health sector the most intriguing recommendation is that the Australian Government should legislate to provide consumers (which would include patients) with a new right to access and use their digital data. The specific recommendation is that:
Consumer data must be provided on request to consumers or directly to a designated third-party in order to exercise a number of rights, summarised as the Comprehensive Right to access and use digital data. This Comprehensive Right would enable consumers to:
- share in perpetuity joint access to and use of their consumer data with the data holder
- receive a copy of their consumer data
- request edits or corrections to it for reasons of accuracy
- be informed of the trade or other disclosure of consumer data to third parties
- direct data holders to transfer data in machine-readable form, either to the individual or to a nominated third-party.
Where a transfer is requested outside of an industry (such as from a medical service provider to an insurance provider) and the agreed scope of consumer data is different in the source industry and the destination industry, the scope that applies would be that of the data sender.
The recommendation as applied to the health sector therefore means that patients will be able to trade and use their digital health data. It is an understatement to observe that the application of such a recommendation to health records will be significant.
Of interest, a common theme throughout the Report is that the Productivity Commission is of the view that privacy is only one aspect of data use and while it is important it should not hold back the future of open data.
For those in the health sector who have not yet appreciated the impact and reach of digital health, the time has come.
Karen Keogh, Partner