Insurance firm wants to mine e-health data
Insurance company Bupa wants the Federal Government to provide anonymous patient data from the Personally-Controlled E-Health Records (PCEHR) system to companies for research on Australian health.
(Sicko image by Viktor Hertz, CC BY 2.0)
Under legislation currently before parliament, only the consumer has control over access to information in their own e-health record, and decides which health practitioners are able to see what information contained in their e-health record.
However, Bupa Health Dialog, a subsidiary of the insurance giant, believes that this is far too constrained, and that in the interests of research, all data should be anonymised and made available to research Australian health consumers.
"Access to de-identified health data on the Australian population is extremely useful to identify the needs and risk factors of Australian health consumers," Bupa said in a submission to the parliamentary inquiry on the PCEHR legislation.
"Health and wellness organisations, such as Bupa Health Dialog, are uniquely positioned to develop and implement sophisticated data-mining tools, which can enable the development of accurate and relevant programs that improve the health of the community."
Bupa could, for example, determine what percentage of diabetes patients don't have their annual eye exam, or the percentage of people with heart disease who don't take statin medication.
"This use of de-identified data would lead to the development of more effective, routine, targeted prevention activities that enable healthcare professionals to make interventions within the right cohorts at risk of exacerbation of chronic diseases, as well as enhance the way we manage existing chronic diseases."
In order to allay any concerns about the privacy of this data, Bupa said that "de-identified" information would have all personal information, such as names and dates of birth removed before it would be made available to other organisations outside the scope of the normal PCEHR system.
While Bupa is arguing for access to be extended beyond healthcare providers, the Australian Privacy Foundation in its submission said that the legislation does not define the term "health provider", meaning it is unclear who exactly will be able to access the PCEHR system.
The Privacy Foundation also called for the government to release current costs for implementing the PCEHR system, and said that the Bills do not guarantee that the system will be ready by July 2012.
"It is better to get this government initiative right than to meet an arbitrary deadline. Everyone is a health consumer, so getting a national e-health system wrong could be very costly in terms of public perception of the government, and set our national e-health agenda back several years," it said.
"The Bills should refer to actual deliverables and benchmarks over and above simply enabling a PCEHR system experiment with clinicians and the broader community in living laboratories."