Should Our Health Records Be Shared or Private?

Do you remember how angry people were when the federal government tried to introduce its new way of storing people’s health records – My Health? The Federal Government had to make changes to reassure people that their privacy was protected.

The health minister Greg Hunt said last year that he was introducing ‘additional reassurances’ to address privacy concerns. Police and government agencies are now required to get a court order to access your health data without your consent.

People can also withdraw from My Health Record and have all information on their electronic health record deleted. The My Health electronic health record can include information on your prescriptions, allergies and medical summaries. The government’s digital health agency insists that Australians’ online My Health Record data is safe.

Are you concerned about privacy?

How do you feel about having all your health data in one place? It might worry you, but there is one group of people who adore health data – scientists! They need it to understand the nature of disease and develop new cures. I am not saying they should be given your medical history (with your name on it) but there are ways that computers can detach names from data and just pass on the information to health researchers without revealing your identity.

Big Data in healthcare is being used to predict epidemics, cure disease, improve quality of life and avoid preventable deaths. With the world’s population increasing and people living longer, models of treatment delivery are rapidly changing, and many of the decisions behind those changes are being driven by data. The drive is to understand as much about a patient as possible, as early in their life as possible – hopefully picking up warning signs of serious illness at an early enough stage that treatment is far more simple (and less expensive) than if it had not been spotted until later.

I recently read a great article on this by Dr George Disney from the University of Melbourne. He wrote that Australia has wider and richer medical data than at any point in history. The potential then to save lives and improve health has never been greater. The problem, according to the doctor, is that in Australia, our high-quality health data is rarely interlinked and made available to researchers, even though it is possible to grant research access in a safe and secure way.

The bureaucrats are stopping the researchers

Barriers for researchers to get data tend to be bureaucratic. Our health and life data is strewn across a range of government departments and agencies, and each is refusing to share it with the other. But, there are many ways to make the transfer of data anonymous and safe. Similar countries are doing it as a matter of routine. Dr Disney wrote:

In New Zealand, medical and health researchers have access to national-level linked health and administrative data. A rich data asset is used securely and safely. And within Australia there are pockets, at the state level, of good practice. Western Australia has a long history of linked health and social-service data. And it is safe – there have been no breaches in nearly four decades of linkage.

Australians are living through the age of big data and data science. Barely a day goes by without news on how an algorithm or artificial intelligence is going to revolutionise our lives. Private companies are already accessing and using as much information about us as they can mine online. They know our movements, shopping habits, what we watch on TV and what we post on social media. They use this data to improve products, services and the ways they can meet the needs of their customers. So why is it that our government is so far behind in their use of linked data?

Australia is being left behind

The government has a wealth of data about Australians’ education, occupations, income, housing and social security. We must of course mine this data safely, especially when it comes to health research and accessing people’s health records. But there are tools out there to do it safely. We must allow our scientists to find out more about disease, prevention and cure, while keeping data anonymous and safe.

The rise of My Health Record, expanding hospital health electronic records, an increasing number of apps, social media, fit bits and crowd supplying data means significant consideration needs to be given to data sharing. In particular, how Australia is going to use data to improve healthcare and manage risks around privacy.

The government is getting advice on sharing our health data

The government has set up anational committee to support the government on how big data is managed and shared.

The main committee is the National Data Advisory Council (NDAC), the key advisory body to the National Data Commissioner. NDAC, established in 2019, includes experts from government, community, business and universities to represent a range of views on sharing data and protecting privacy.

NDAC will advise on the new data sharing and release laws which will modernise the way public sector data is used. 

“Data influences our lives in so many ways,” said Professor Louisa Jorm, Director of the Centre for Big Data Research in Health. “We generate data every day in everything we do – we need to use that ethically and safely and put it to good use.”

For health data, there is also the Australian Institute of Health and Welfare’s (AIHW) Independent Expert Panel for development of a National Health Information Strategy. 

In Australia, we have universal health care and good and consistent data collection. We just need a system to connect scientists and data. The truth is we need Australian data to understand Australian health problems. I am all for protecting privacy and health records but I also understand that scientists and researchers need to know about our health so they can develop new cures for tomorrow and keep future generations of Aussies in good shape.