Effective Use of Public Health Data Depends on Our Willingness to Be Governed

doctor looking at data

If you’re looking for countries with a truly world-class healthcare system, you’d be hard-pressed to find a better role model than Denmark. All Danish citizens enjoy equal access to free universal healthcare services. It’s a key factor to the populations’ above-average life expectancy and low amenable mortality rate.

Underlying this success is a strong foundation. 11% of GDP is spent on healthcare, fifth-highest among OECD nations. Most health sector funding comes from taxpayer revenue, accounting for 85% of expenditure. This reflects the citizens’ strong values and belief that the burden of solving public health issues should rest upon the system, not the individual.

Having this foundation matters more than ever. In this age of big data, patient information, insurance records, clinical trial results, and data harvested by apps and mobile devices can all merge. This can lead to powerful insights for the improvement of public health policy and institutional decision-making. Or it can be abused for compulsory state surveillance and make privacy violations a matter of routine.

The stress of pandemic response

With over a year and a half of collective pandemic experience behind us, it’s safe to say that no country was prepared for this. There was no template for an effective response. Instead, every nation was left to figure things out on the fly, sometimes attempting to emulate measures taken by others, often with varying success.

In most countries, the brunt of the pandemic was definitely borne by the healthcare system. But that’s not the full story. Stay-at-home orders mandates to wear masks and observe social distancing, and decisions to close borders all had knock-on effects on the economy and society.

Covid-19 was essentially a critical threat to every country’s governance. It massively strained the core relationship between the state and its people.

The current signs indicate that, despite making some progress with vaccine campaigns and economic recovery in many places, we’re still facing a long battle with the virus and its variants. However, the common theme is that countries with effective and inclusive governance have thus far weathered the storm better and face a more promising outlook for early recovery.

men working on data

A litmus test for big data

So what does the pandemic, and its correlation with good governance, have to do with big data in public health? Actually, everything.

Consider the example of South Korea. This isn’t just an OECD member nation with a high-quality healthcare system. It’s also a world leader in technological development and deployment. And it has considerable experience dealing with outbreaks of threatening infectious diseases, such as SARS in 2002 and MERS in 2015.

Due to the lessons learned from these critical events, South Korea had already established a state-of-the-art smart cities digital hub system. It had provisions ready for the conditional collection of data in the event of a future outbreak. Its citizens had demonstrated willingness to surrender that data, despite the risks of hacking or draconian state control.

Without being able to foresee the future, South Korea somehow had nearly ideal preparations for the challenges Covid-19 would pose. And big data played a major role in those measures, as it enabled the creation of a central database tracking individuals and their movements for effective contact tracing.

Still, cracks emerged. There was controversy surrounding the use of data in identifying an infectious cluster centered on gay clubs in Itaewon. Places that had been visited by persons testing positive would experience abrupt loss of business. Petitions were raised by Koreans calling for increased privacy protection, even if their data was being used to combat the pandemic.

Too early to handle big data

South Korea provides us with an example where public health data could clearly be used for the benefit of all, with an infrastructure prepared for it. And despite its overall success, there was friction and some violations of public trust.

A data set doesn’t just tell you about a patient’s health or past procedures. It can tell you if they opted for dental crowns, bonding, or porcelain veneers, for example. But when cross-referenced with credit card data, social media activity, and geolocation, it’s easy to break through the veil of anonymity and identify individuals with certainty. That power can be used for many purposes, not all of them good, and not all of them restricted to individuals with legitimate access to the data.

Medical ethics clearly outlines this inherent conflict. Its principle of beneficence states that research has an obligation to maximize information for everyone’s benefit. Yet in practice, the impossibility of guaranteeing privacy or unbiased use of data violates ethical principles of autonomy and nonmaleficence.

If you’re Denmark, with its robust governance and public investment in the healthcare system, the ethical risks of using data for public health improvement are mitigated. But for most countries, big data needs to be greatly held in check. As the pandemic shows, we need far more time to strengthen that foundational relationship between people and state.

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