Overcoming the great data divide

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There is little doubt that we have entered the “data revolution”. Mass information is at our fingertips; personal information is collected at every opportunity. The volume of data generated each day equates to 2.5 quintillion bytes with 90% of the world’s existing data created in the last two years, according to technology news source, VCloudNews.

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Two years ago the United Nations identified that data was creating another social divide, with the world’s poorest, most marginalised people excluded from the information flood. To address this, a special advisory group was appointed to determine how to involve everyone in the data revolution, to increase the quantity, quality and usability of data with the overall goal of improving people’s lives.
The group comprises experts from civil society, private sector, academia, governments and international organisations, the people who manage data for governments and the people who put together the global numbers.
The data social divide is not just occurring at an international level. In Australia, there is a chasm of difference between data collection and its application – particularly in aged care.
At present, obtaining high quality, meaningful data and translating it into practice can prove to be a significant enough hurdle as to halt the data collection process.
Being predominantly Government-funded, age service providers collect large volumes of raw data on behalf of Government but they do not own it, hence they cannot store it. The data collected is not always made available to the industry, nor used in an informative manner.
While the Government must balance its responsibilities regarding privacy and confidentiality, this existing information has the ability to enhance service delivery. It makes little sense that it is not shared with providers, academics or industry bodies to inform continuous improvement initiatives.
Likewise, if we are to improve the quality of data to gain maximum benefit from its collection, there needs to be an improved interface between Government and providers for determining questions and defining the measurability, appropriateness, scalability and affordability of revised or future data collection strategies.
The lack of integration between My Aged Care and My Health Record is of particular concern for both aged care and health providers. These two systems continue to operate completely separately from one another, creating a concerning yet avoidable information gap for both health providers and aged care providers.
The wealth of ‘social care’ information about an individual held by residential aged care and community or home care providers is largely missing from most people’s health records. Such valuable information would give health professionals a much clearer picture of the person they are treating, likely enabling faster diagnoses and better targeted treatment or support. However, until aged care providers are recognised as part of a person’s primary care team and have access to up-to-date health records, there will remain a significant gap in information sharing amongst professionals to the detriment of the individual.
As we continue to move to consumer-driven service models, the role of data in informing quality improvement activities is increasingly vital, but meaningful data is currently limited in scope, collection design and availability. Improvement activities that stand to benefit from improved data application include benchmarking, education and training opportunities, and internal policy and procedure reviews.
To illustrate this point, LASA believes the three quality indicators currently being introduced into residential aged care, which focus on clinical care of pressure injuries, use of physical restraint and unplanned weight loss, may not achieve the desired outcomes of informing consumer decisions and assisting providers in their quality improvement activities.
To address this, LASA has proposed that a comprehensive suite of quality indicators be developed from which providers can select based on their specific application to business and strategic intent. The information collected could then be submitted to the national database to assist in developing national benchmarks and achieve the goal of quality improvement for the provider.
Once such benchmarks are established, the ongoing data collection would serve to inform continuous improvement for providers and people’s own personal development or decline. Such data would also help to inform population health studies connecting aged care with primary care and emergency care – an area currently fragmented in terms of data collection due to different state and local health management policies.
With the changing demographics of age service consumers, it is unsurprising that demand for certain services and products is also changing. However, quality measures in aged care are still defined by Government-led regulation and compliance, not continuous improvement based on industry and consumer feedback. The aged care quality standards focus on regulation and compliance, not innovation or continuous improvement driven by consumers. Not only does this place unnecessary administrative burdens on providers but it fails to address people’s wants and needs.
We have seen the impact on other industries moving to share economies – mostly in response to the arrival of disruptive services such as AirBNB and Uber. Aged care is not immune to this and Government and industry must be prepared for disruptive technology and services that bypass current regulation.
Such age service already exist overseas. In the US a company called “Honor” is already providing ‘Uber-style’ home care services ranging from medication reminders to transport, housekeeping, personal hygiene, companionship and helping people keep active. It is only a matter of time before we see similar services in Australia.
Alongside this shift in demographics and changing demand for services, the significant reforms that continue to affect our industry present a considerable opportunity for innovation. The absence of meaningful data and the disconnect between what quality means to consumers and existing quality indicators, however, is a hurdle that must be overcome. The benefits to consumers, providers, innovators, health professionals and more broadly, the health system, will be immeasurable.

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“The data social divide is not just occurring at an international level. In Australia, there is a chasm of difference between data collection and its application – particularly in aged care.”

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