What blockchain means for health record data

Data source: Google Trends

Thus, the situation is murky, but rapidly becoming an important issue for all those involved—and with good reason.

Why data ownership matters

Data ownership is important for several reasons, made all the more important when speaking about health data, which is deeply personal, has a high risk for misuse, and is extraordinarily valuable.

Control over Access
First of all, ownership means control over access. Whoever owns the data gets to determine who has access to it, when and for how long, and to what extent. And it’s worth keeping in mind that, in practical, real-world terms, the reverse is also true. Regardless of what a law or regulation may state, the entity that has actual control over access to data is its de facto owner, in every meaningful sense. Thus, control to access and ownership go hand-in-hand. And right now, individuals typically don’t have control over who accesses their health data, for how long and when—at least not with any practical level of granularity or ease. Certainly, HIPAA and other regulations restrict access and sharing between institutions to a certain degree, but the patient is still left largely out of the equation.

Right to the fruits of exploitation
Next, ownership means right to exploitation and to benefit from the fruits of that exploitation. This is especially pertinent for clinical trial information and medical data collected from wearables, both of which are used by pharmaceutical companies and Big Tech giants to generate revenue. The infamous case of Henrietta Lacks’s skincells—harvest and commercialised without her consent—is a salient, if extreme example of this.

And it’s true, patients benefit from advances in research—but as we’ll see below, when given the option through changes in infrastructure and new technologies, they also firmly believe they should share in the financial benefits of the exploitation of their health data.

And there are good arguments for it. Certainly, pharmaceutical companies and other users of health data take financial risks in, for example, funding clinical trials. But patients take substantial medical risks in participating, too. And if that data gets leaked or sold, the risks to patients’ privacy, wellbeing and and lives can be severe. Fortunately, for reasons I’ll explain below, patients havinh more control over exploitation of their information can actually be a very good thing for companies who generate revenue from health data.

Right to decide how data is used
Third, and in a similar vein, ownership means deciding what the data gets used for. When one reliquinshes or is made to relinquish ownership and control of their data, it can be used for purposes that contradict their fundamental beliefs. Data from one study being used to aid research into, for example, stem cells could pose a significant problem to a devout Catholic.

De-identified genetic information being sold to a chemical weapons manufacturer, though an admitedly dark and extreme example, nonetheless demonstrates quite well why control over data use is important.

Data responsibility

And finally, ownership means responsibility. As it stands, data controllers bear the brunt of the responsibility when it comes to managing and protecting data. Of course, that’s not a bad thing—it’s important for corporations, organizations and governments to protect the data they use and share. But it has removed personal responsibility of data from individuals, and an argument could be made that this has made people fundamentally less aware, less concerned with its ownership.

Ownership has a legal sense, but there is also the important concept of ‘taking ownership’ of a situation. Individuals today create and share vast amounts of data and, ‘freed’ of the responsibility for it, fail to consider the above issues.

Now, let’s be clear: there are obvious financial and commercial reasons for corporations wanting to obtain ownership of personal data. But, it would be wrong to say that this is the sole and only reason the issue of data ownership has become so complex, and especially in the case of EHRs and medical data. Most practitioners don’t assume data ownership over EHRs for commercial reasons, but simply because logistically, it hasn’t been possible for patients to take their data with them in a convenient, secure, practical, compatible way.

Blockchain technology can do just this.

Blockchain and health data

Most people know of blockchain for its use in cryptocurrency, but the technology itself can be used for a near infinite number of applications. Rather than a specific piece of software, blockchain is a conceptually novel way of storing data, one that is robustly secure and private.

One of the features of blockchain use in cryptocurrency is that individuals can have a virtual wallet where they store their cryptocurrency (called ‘tokens’ or ‘coins’). This wallet can be accessed only by the individual with the key—but with that key, it can be accessed from anywhere.

Applying the same concept to personal medical data offers many benefits. Individuals can now ‘take their data with them’, easily and securely, which helps eliminate one of the most significant technological barriers to improved data ownership.

Blockchain technology also enables users to share data easily and securely. And, just as importantly, the technology has the potential to offer full control over that access. By using something called ‘smart contracts, for example, which are special applications that run on a blockchain, it’s possible to keep a running register of who has access, when they accessed it, and perhaps even why they accessed it (much like organisations are required today under HIPAA to state their reasons for access, except these would be shared with the patient, the data’s owner), and the ability to approve changes to EHRs or sharing request made by providers, and take away access at any time.

Blockchain technology can also be made completely decentralized, which comes with important security benefits, including the fact that the data cannot be altered without somehow securing control over the majority of nodes in a blockchain—not something easily done. The equivalent of close to one trillion US dollars now sits on cryptocurrency blockchains, lending credence to just how secure the system is.

Thus, blockchain technology makes it logistically possible for patients to store and control their data, and thus paves the way for legal and regulatory bodies to adopt new, patient-centric, universal data ownership policies. The data would be owned in theory and, more importantly, in practice by patients. In fact, it’s already being done.

Patients are getting excited about blockchain data ownership

Cases are starting to crop up of patient groups organising themselves to take ownership of their data, store it in a secure format like blockchain, and even benefit financially from research.

A study published in the Journal of Medical Internet Research showed that all seven of the patients it interviewed were interested in the idea of using a blockchain-powered smartphone app to take greater control over their data. Practitioners they interviewed were also very excited about the idea of being able to request and have access to only the data they needed, and nothing else.

Likewise, a survey by CysticFibrosis.com found that 90% of its users were interested in the idea of getting paid for their data used in research. That survey was run by CFTechnology, a non-profit under CysticFibrosis.com which offers a technological solution for just this. Centiva by the dHealth Foundation is another publicly available blockchain-based smartphone app created for storing and sharing personal medical data.

All of this isn’t to say there aren’t significant hurdles to be overcome. Some are logistical, like ensuring hospitals, pharmaceutical companies, practitioners and others can access and share the data in practical, convenient formats. Others have to do with patients’ understanding of blockchain or technology in general, and their hesitance to adopt new tools, despite the many benefits they offer.

Nonetheless, there is a decidedly growing interest in the use of blockchain for more secure medical data storage, in a way that benefits stakeholders and leaves ownership in the hands of patients.

What patient-owned data means for pharma
Companies whose revenue depends on access and control of data may balk at the idea of patients being able to widthdraw that access on a whim or decide what uses they can make of it.

However, the studies mentioned above demonstrate that most individuals are more than willing to share their data with research institutes, pharmaceutical companies, and others. They simply want to feel safer doing so, and ensure its use aligns with their own objectives and principles.

When that’s ensured, people are actually more comfortable sharing their data. And that’s a great thing for researchers and businesses, because it means access to a much wider and more diverse dataset. It helps break down geographical barriers, for example, as well as socioeconomic and logistical barriers.

Patients also respond well to financial incentives to contribute their data. There are some ethical landmines to be navigated here, like the fact that poorer individuals may find themselves forced into selling valuable and private medical data just to put food on the table. But overall, the idea of a well-regulated and highly secure marketplace for critical research data, and one that benefits the patients, is a good one.

Pharmaceutical companies could also gain access directly from patients and the general public, instead of having to go through super tightly regulated channels that currently impede research efforts. Imagine, as a pharmaceutical company, being able to launch a call for data from patients with a particular disease via an app. Suddenly, data from thousands of individuals across the country or world is made available to researchers. This means faster drug discovery and better performing drugs—an essential factor for effective outcome-based pricing.

Thus, there are many avenues by which giving ownership of patient data over to patients could seriously benefit pharma companies, and the entire healthcare industry.