In Healthcare, Data’s Prognosis Is Never Clear
- By Lachlan Colquhoun
- October 31, 2022
For an industry where technology is critical and can save lives, the healthcare industry is strangely lagging behind other sectors in its use of data.
In part, that is explained by the highly sensitive nature of the information. Not all patients like the idea of sharing their health records and data. Some healthcare providers are proprietorial about their patients’ records which, in Australia, remain the property of the clinic or doctor.
Then there are the usual issues around extracting data from different legacy systems and combining them, making them interoperable and available to other providers. So, for example, if someone desperately needs a doctor after falling sick in the Australian outback, it would be ideal if the health professional treating them had access to their records. But it’s not always the case.
Australia has had a centralized record-keeping system called My Health Record for more than ten years, and more than AUD2 billion has been spent on the system since it launched.
There are 23 million people registered in the system, yet the latest Australian Digital Health Agency report showed only 2.69 million people accessed their records in 2021. This was an increase of 14% from the previous year and was likely driven by the COVID-19 pandemic.
Some doctors in emergency departments and pharmacists report that using My Health Record is helpful in their work. But only an estimated 2% of clinicians are using the system.
Too often, records from consultations, emergency department visits, pathology, and diagnostic testing are just not being uploaded. Unfortunately, this defeats the concept of a national and comprehensive records system that can give clinicians a whole patient view, which may sometimes save their lives.
Inoculating with governance
Then there are cultural issues around using technology. People in the industry say that technology such as machine learning and artificial intelligence to health data will ultimately be able to perform a majority of consultations, leaving doctors to focus on the more critical cases.
This sounds like a great move forward in a world where demands on the healthcare system are increasing exponentially. Yet, many doctors have the technology available now and choose not to use it. Some patients, particularly older ones, feel reassured by the presence of a human doctor, even on a remote call.
There are also other ethical issues. For example, aggregating data for research and analysis is also seen as a game-changer in understanding markers for health conditions and predicting likely outcomes. Yet, some projects have been closed down because they are seen as ethnically or gender-biased.
“The data challenges are impeding more efficient delivery and tying up health administrators in knots of compliance and ethical dilemmas”
Data governance and issues of privacy and consent are still a work in progress in healthcare despite all the fantastic breakthroughs made in research and treatment. The data challenges are impeding more efficient delivery and tying up health administrators in knots of compliance and ethical dilemmas.
A sick system
In some cases, the health system is its own worst enemy as it struggles to make progress. Australia, for example, has been hit with a spate of severe data breaches, two of which have been in the health sector.
Health insurer Medibank confirmed that the data of its 3.9 million customers were exposed in a data breach. It comprises personal information, identification numbers in the national Medicare insurance scheme, and the claim codes.
Incredibly, the company admitted it did not take out cyber insurance because of its cost — and since then, almost AUD2 billion has been wiped off the company's value. It also faces a fine in excess of AUD100 million and potentially a class action.
The data exposed in the Medibank hack is sensitive enough, but even more, was the data accessed in a hack of pathology service Australian Clinical Labs (ACL).
A cyberattack targeted that company in March 2022. It only went public this week, confirming that the data of 223,000 people — including their health records — had been stolen, and some of it posted on the dark web.
Reimagining care
There are glimmers of hope, and some startups in the healthcare sector are taking an innovative approach, more often found in fintech companies.
Australian startup CancerAid, for example, has just formed a joint venture with U.S. telehealth leader Teladoc Health. CancerAid provides patients with information specific to them, a treatment plan, a digital journal, a database for their medical records, and access to a global community of people with similar health issues.
The company sells its services to leading corporates, who then make them available to staff members experiencing cancer or caring for someone with the disease. Insurers are shaping as a major market as they reposition their business models from providing a financial product to holistic care.
In the CancerAid case, data is only one part of the equation but is joined to the other parts as part of a larger offering. A recent study showed that the CancerAid program improved patients’ chances of returning to work by 73% and reduced the time people take to return to work by 22%.
The intelligent and innovative use of data can be a positive force in healthcare. If only the system could find a clear way of prescribing it.
Lachlan Colquhoun is the Australia and New Zealand correspondent for CDOTrends and the NextGenConnectivity editor. He remains fascinated with how businesses reinvent themselves through digital technology to solve existing issues and change their entire business models. You can reach him at [email protected].
Image credit: iStockphoto/ipopba