Returning to the root trigger of the discussions - ACCC
HEALTH and AUSTRALIAN GP’s SHARING PATIENT DATA?
“ Clearly personal health data is an increasingly valuable commodity…recent reports from the US of Google’s ‘Project Nightingale’, which involves the use of health data from a large health care provider….” ACCC Chair Rod Sims
It is strange people look elsewhere for the examples. We have these events in our own back yard!
Since August 2019 the Federal Department of Health through the Primary Health Care Networks has, initiated collecting patients data including weight height blood pressure gender your alcohol habits your sexual orientation, postcode, surgery you attended DOB etc directly from your personal GP’s files. The process is called PIP - QI. Your GP surgery allows PHN to walk in and extract the data from the patient files - including your file. To avoid political alarms the process is often being denied or covered over as “Quality Improvement” . The data shared is indicated in table 1 - https://www1.health.gov.au/internet/main/publishing.nsf/Content/D4FE6997059769B8CA258426000794AF/$File/Practice%20Incentives%20Program%20Eligible%20Data%20Set%20Data%20Governance%20Framework.pdf
To get the data from GP files a private company software has been “decreed” to be the data extractor which must be used on the GP files. There has been no consumer/ patient involvement or notification. Your GP is in effect trapped into selling data to the PHN as if they DO NOT do so they lose existing Govt funding. In an existing large practice this maybe as much as $50K p.a. It is no surprise the AMA & RACGP executives signed off. Money talks.
The GP medical professions havebeen repeatedly reassured by PHN, Govt and RACGP “all is OK”. Your (patient) data is de-identified and encrypted before being shared with others. You, the patient, are “deemed” to have consented indirectly by a very liberal interpretation of a concept known as “secondary data”. Secondary data is a complex issue. Ironically the secondary consent process requires consideration of the ethics and consent from the source of the data - that is your (patient) consent! Is there an ethical consideration about doctors selling your information?
The prestigious respected Royal College of Physicians has noted :
“… Legislative authority for secondary use is inferior to having informed consent from the perspective of patient trust and confidence. …”
Government is intimately aware of this situation it has fostered - PIP-QI very deliberately just bypass the public. As a contrast , during the creation of the National MyHealth Record MyHR system, consumers were very clear about owning their data. Multiple millions of dollars were spent to understand the consumers view. Core principals like …the patient never needs to advise their doctor of their choice to opt in or out of MyHR are well documented and understood . YOUR consent for MyHR is entirely patient controlled. No awkward discussions with your doctor about your feelings or position on privacy. The MyHR has multiple opt out levels - opt out all together, make some items restricted as to who can see them AND / OR withdraw consent from all secondary data use. [ https://www1.health.gov.au/internet/main/publishing.nsf/Content/eHealth-framework ] PIP QI by-passes this process - there is no patient notification, you must talk directly to the practice manager and your doctor if you do not consent to PIP-QI
It seems a large slice (not all) of the medical profession is happy to take the money and sell your (their patients”) data onto the PHN. Maybe a better quote for Mr Sims is
“ … Data is increasingly valuable… and as we have seen in recent years …data is SO valuable that it seems to out-strip our [society] capacity for ethics judgement or governance. ”
The backroads of artificial intelligence recorded 30 May 2019 New Professors Talk University of Newcastle. abc.net.au/radionational/programs/bigideas/the-backroads-of-artificial-intelligence/11495506
I am really interested - how do you feel as a consumer / patient about this?
Why are the established MyHR rules bypassed and the consumer sidelined for PIP-QI?
Next time your GP checks your blood pressure or asks about your alcohol habits - what’s the motivation for process - your health or the practice pay packet? Is this ethical and professional behaviour?