Subject: APF Media release: Is this why the government really wants your health data?
From: Bernard Robertson-Dunn via Privacy <privacy@lists.efa.org.au>

Sent to the media Mon 30 November 2015  14:29 UT+11

The government is looking for ways to mine everyone's health data.

The take-up of the eHealth record system and its use so far has been miserable. The government's response has been to pass legislation that is aimed at ensuring that most Australians' health data are included in a massive, central database. This will give everyone who doesn't opt-out a health record, whether they need one or not, want one or not.

Now the Government has just issued a Request for Expressions of Interest (REI)[1] asking for ideas on how to use this data for reasons other than direct, patient health care. Secondary use they call it. Others call it dangerous and vague.

The reasons why they are doing this are less than clear. The REI includes this "The Department aims to achieve its vision through strengthening evidence-based policy advice, improving program management, research, regulation and partnerships with other government agencies, consumers and stakeholders."

Questions that spring to mind are:

What are the limits to "research"? Does "research" extend to investigating the health care practices of GPs to make sure they are not over-servicing patients? If they do, it could well lead to alienation of health professionals as their autonomy is progressively intruded upon by Government. GPs already face civil and criminal penalties if they or their staff misuse data from the health record. This potential secondary use will not make them feel any more comfortable.

What sort of "partnerships with other government agencies, consumers and stakeholders" do they have in mind? What sort of partnerships? Do they include financial arrangements? Do "stakeholders" include insurance or pharmaceutical companies?

The concerns are not so much what the REI says, it's what it doesn't say and what can be read into it.

The REI also includes this rather naive statement "The final framework will ensure that personal data contained in the My Health Record system will remain secure and always be de-identified for secondary use purposes."

In today's environment of big data and techniques for re-identifying supposedly de-identified data, this aim is unrealistic. It demonstrates a worrying lack of understanding of current technical capabilities from the people who are supposed to be ensuring that Australian's health data is properly protected at all times.

The Privacy Commissioner has warned that "Big data and data analytics mean that there are increasingly more methods of matching and identifying information previously thought not to be personal." [2]

Other research supports the conclusion that there is no such thing as de-identified data when other data sets are available against which to perform data-matching.

As Roger Clarke points out: "...rich data-sets are vulnerable to re-identification procedures. These problems afflict all big data collections that are intended to assist in the management of long-term relationships. The problems are compounded by the expropriation of data to support purposes extraneous to the original context of use, such as longitudinal research studies." [3]

Any agency or private sector company that has data on individuals will be able to take de-identified data and cross match it with data from the My Health Record system. Experts in big data have suggested that successful matches can be achieved in about 80% of cases. The more data they have the better the chances of matching. Government agencies such as Centrelink and Medicare have so much data on so many Australians that this figure is probably much closer to 100%.

There has always been a suspicion that the government wants to get its hands on Australian health data for purposes other than health care. This REI looks as though that suspicion has more than a hint of truth to it.

The APF strongly suggests that the Department of Health clarify exactly what it intends doing with Australians' health data, what limits it will put on stakeholders and how it will address the re-identification issue, both now and in the future, when capabilities are likely to be even more powerful.

It needs to do this well in advance of moving to the next stage which will be the issuing of a formal tender for a detailed framework for secondary use of health data.

It also needs to do this before the opt-out trials. It should include a full disclosure about what it proposes to do with Australians' health data in its public education program so that those who care for their privacy can decline to be part of this initiative.

References:
[1] Request for Expressions of Interest
https://www.tenders.gov.au/?event=public.atm.show&ATMUUID=8E239B9D-9AA6-22E1-215E1A7DD804A2CB 

[2] Privacy Commissioner
https://www.oaic.gov.au/media-and-speeches/speeches/privacy-directions

[3] Big Data, Big Risks
http://www.rogerclarke.com/EC/BDBR.html

-- 
Media Contact.

Dr Bernard Robertson-Dunn
Australian Privacy Foundation
Chair Health Sub-Committee
Bernard.Robertson-Dunn@privacy.org.au