Coronavirus pandemic sparks push for data privacy in healthcare

The global coronavirus pandemic has changed our day-to-day lives in just a few short months. Around the world, people are adapting to a new way of life, isolating themselves from friends and family to help fend off an invisible enemy.

On a wider scale, economies are feeling the strain, and governments are under immense pressure to counter the effects of dramatic societal changes. In large part, this pressure comes from ensuring that healthcare services are able to cope with the unprecedented increase in demand.

Balancing individual rights with protecting society

The race to combat the spread of the virus has seen technology used in innovative ways, with the likes of Apple and Google collaborating on contact tracing apps. These efforts, however effective, have also raised concerns over privacy. 

In South Korea, the government’s effort to track citizens with COVID-19 symptoms pinpointed carriers with such a degree of accuracy that it was forced to revise its own privacy guidelines. In the US, tools like Project Baseline, from Google sister company Verily, have raised concerns over the potential sharing of data with third parties.

While technology can clearly play a role in fighting the spread of the coronavirus, the invasion of privacy is a byproduct which should not, and cannot, be ignored.

“We’re in the middle of a global pandemic and therefore some difficult choices will need to be made”, says Sam Shah, clinician, digital health technology advisor, and former director for NHS England. “We need to balance the rights of individuals with the protection of society. These circumstances are fairly unique and the decisions made now may not be characteristic outside of a global pandemic.”

“Any invasion of privacy needs to be carefully justified and it must be made clear to citizens how that data will be controlled and processed both now and in the future,” Shah adds. “It is important that we use the right data at the right point in time to help manage the spread of coronavirus, but that shouldn’t mean that all our existing privacy safeguards are removed.”

How blockchain can protect privacy in healthcare

The decisions made during the pandemic could have lasting impacts beyond its eventual conclusion—and privacy advocates are already making their voices heard. Earlier this month, 300 academics from 26 countries signed an open letter warning that, “Some ‘solutions’ to the crisis may, via mission creep, result in systems which would allow unprecedented surveillance of society at large.” This week, over 140 cybersecurity experts put their names to a letter criticizing the privacy policies of the French government’s StopCovid contact tracing app.

One blockchain-powered project that’s working towards the goal of privacy in healthcare is Solve.Care. It’s using smart contracts powered by its ERC-20 Solve utility tokens to build solutions for healthcare administration, care coordination and payment management. 

Blockchain unlocks a powerful tool in the fight to maintain privacy: decentralization. It’s a solution that inspired Solve.Care CEO Pradeep Goel, years before the term ‘blockchain’ even existed.

“I recognised as a patient, a parent, an employer and a health insurance executive, that the way we approach healthcare is centralized and yet isolated from each other,” says Goel. “It hasn’t served the patient well, it hasn’t served society well in terms of economic impact, and we continue to be highly inefficient. It’s downright scary.”

Putting patients at the heart of healthcare

Goel believes that the common thread across all countries, whether it’s the US, UK, Australia, China or India, is that the patient is not at the center of healthcare delivery. In his words, patients are more of a beneficiary or a recipient of care, rather than an owner of their care journey.

Having worked on the launch of the Patient Protection and Affordable Care Act (commonly known as Obamacare) in the US, Goel knows all too well the problems that can materialize in the healthcare industry. 

“I saw a massive investment made in trying to achieve this dream in which every clinical, administrative, employer and procedural entity can connect with each other, wallowing patients to finally receive the value of this communication—not just medical records, but status and care protocols too. None of that ever materialized, despite billions being invested.”

On the contrary, according to Goel, the US healthcare system is now plagued with more silos that communicate with each other even less frequently than before. Patients are finding that their doctors are spending more time updating their electronic medical record system, than actually interacting with them. 

Blockchain is emerging as a possible solution to the problem. Speaking at last year’s Fintech Connect conference, Dr. Robert M. Learney, lead technologist for blockchain at UK technology innovation center Digital Catapult, argued that blockchain could be used for “everything from track and trace shipments [to] restoring primacy of ownership of data back to the patients themselves,” using technologies such as ZK-SNARKs and multi-party computation. At the time, he foresaw “two to three years of experimentation” before blockchain could shake up healthcare. Of course, that was before the coronavirus pandemic spread around the world, acting as a catalyst for the rapid development of healthcare solutions.

In essence, blockchain, and other decentralized technologies built on top of it, enables stakeholders within the healthcare industry to share access to their ledgers without compromising the security and integrity of their data. Ultimately, patient data can be more carefully managed without a single entity owning all of the data, to provide a higher level of care. “We’re trying to implement a platform that allows a transition from the existing, centralised and highly uncoordinated model of care, to a well-coordinated model of care with the patient at the center of it,” Goel continues.

In the current COVID-19 pandemic, for example, contact tracing apps running on blockchain could share vital information among stakeholders such as governments and healthcare providers, while at the same time ensuring the privacy and integrity of patient data.

A question of consent

It’s all very well stating the benefits of controlled and secure sharing of data, but the benefits hinge on whether people consent to their information being used in the first place. 

“Privacy is extremely important both in general but even more so in healthcare,” says Shah. “Healthcare providers are working with some of the most sensitive citizen data. There are different perspectives on data ownership, but the widespread agreement is in the need for transparency in how data is used and allowing people to have some choice in how data is shared.”

In 2019, research by IBM and Harris Insights found that over three quarters of US citizens (76%) considered it important or extremely important that healthcare services maintain the privacy of their data. In the same year, the Advertising Research Foundation found that US citizens were less likely to share personal information than they were in a previous study conducted the year before. The results show that people are less likely to willingly share data if they’re not clear on how it will be used, where it will be stored, and what benefits it will provide.

In a separate report by Accenture, published around the same time, 69% of respondents stated they wouldn't do business with a brand if its data usage was invasive. Despite this, the percentage who said that they're willing to share more if brands are more transparent, rose to 73%, from 66% in 2018.

It shows there’s an appetite for sharing data if it leads to better results, or more convenient experiences—as we’ve seen in the proliferation of social media. In healthcare, it suggests that patients will feel differently about sharing their data depending on the benefits it offers to them—especially during a pandemic, where those benefits include their personal safety and, potentially, the easing of lockdown restrictions.

The future of healthcare

The global COVID-19 crisis has us all looking to the future to see what, if anything, we will collectively learn from the experience, and how we can drive change for the better.

“Healthcare provision is a complex orchestration of highly decentralized entities, so why do we try to impose centralized forms of control?” says Learney. He argues for a “multi-vendor, multi-innovator ecosystem” centered around the patient, using shared records of fact and intelligent software agents to manage resource provision. “The biggest question,” he says, “is: ‘How do we get there?’.” 

There are so many intermediate steps required to achieve this end goal, that some see it as intractable, Learney adds. For the time being, we’re stuck with the “glacial institutions of today, always a step away from a truly dynamic and responsive healthcare provision.” Still, there is reason to be optimistic. While some of the drive towards decentralization and transformation will no doubt have to be centrally driven, he says, “with the right shape, the infrastructure could be managed for the benefit of all.”