Big data is the best tool we have to solve big problems. It is essential to manage and track infection, manage medical supply chains and healthcare talent, and plan for the future.
How can we balance privacy and data? The regulation and legislation of big data, such as the General Data Protection Regulation (GDPR), and California’s Consumer Privacy Act, are only partial measures. The demand side of the data equation has been so heavily emphasized by regulators and pundits — that is, the sale or use of private citizens’ data through corporate applications like Uber, Google, and Facebook without their awareness — that they have neglected to consider the supply side: Where data comes from, who created it, who owns it, and who captures it.
You do. These data are only a part of your digital identity, the “virtual yourself” created by your data contrail on the Internet. This is how you are viewed by most institutions and corporations.
It is time that we start taking personal data as seriously as top tech companies. It is important to recognize its true value in every aspect of our lives. Blockchain technology is a way to do this. It allows us to make better use of our data and can even help us improve our health. While there are many areas in which taking control of your data could improve your life, healthcare data is a promising area to start.
Security Of Health Data
Our data cannot be used to plan our lives or long-term health. This includes our treatment plans, how we use our savings accounts, and whether or not we have Medicare Supplements or insurance. All of these data are stored in silos by other people — in separate databases of multiple healthcare providers, pharmacies and insurance companies as well as local, state and national agencies. We can’t access them, but third parties such as the American Medical Collection Agency can.
While we do not enjoy the benefits of data usage, we also bear the majority of the responsibility for cleaning it up if it is lost or abused.
These data assets cannot be monetized or managed for our own benefit, nor can we do so for our families or heirs. Think of Henrietta Lacks who’s cancer cells helped to revolutionize the development of cancer treatment. This resulted in a split of wealth, reputation and all its discontents. While they may not have privacy issues or data profiles, those who are denied access to the Internet cannot participate in the global economy. They also often don’t have bank accounts, addresses or official ID cards. These are not people without papers. These are people who don’t have data.
Our Privacy Is At Risk
Our privacy and that of our families are at risk. To control the spread of Covid-19, the Chinese government used mass surveillance. This included tracking data about who was infected and where they lived. It also tracked who they contacted, their temperature, and how they moved around. Privacy is the foundation for freedom. We may be tempted to trade our privacy in times of crisis, but once the crisis has ended, there is no way to recover or mask the data.
We cannot influence or develop the health policies of elected officials. We also can’t advocate for the changes that our family needs. And while we are unable to collectively bargain with other patients, or use powers of attorney to lower delivery costs, any other party can do all this with our data. Not only can we negotiate coverage and rates with the governments, but we can lobby them for industry-friendly regulations.
Wearables and the Internet of Things allow us to capture insulin levels, blood pressure, steps taken and climbed in a given day. We can solve the five issues above by gaining access to our medical and other personal information. This will allow us to monetize, advocate, secure, privacy, monetize, and monetize our data. It is important to use existing technologies to manage your data according to your terms.
Patient Control Of Health Records Could Speed Up Data Collection For Treatments
Canada’s University Health Network (UHN), a pioneer in blockchain technology, has created a win-win solution. Blockchain technology is a software that acts as a shared ledger across computers connected to a communication network. This type of ledger is different from other interfaces to traditional databases or health records repositories. Its decentralization allows us to control transactions between our data peers and its immutability means that no one can undo or alter those transactions without the approval of the majority of the network.
UHN launched a platform for patient control and consent in 2018 to improve patient experience and facilitate clinical research with patient data. The platform, which was developed in partnership with IBM and based on workshops with various stakeholder groups, uses blockchain to not only secure and consolidate patient data but also obtain consent from patients before sharing any information with researchers.
The software records the details of consent transactions on the shared ledger and encrypts them automatically when patients give their consent. The platform records who accessed the data and when.
This functionality can be extended to include contact tracing. Imagine the UHN solution being interconnected with healthcare facilities across Canada so that all Canadian patients could share their personal data. This would include location and time. Brian Magierski, Care Chain collaborator, said that such a “platform for reporting, tracking and notifying, that is global in nature, respects privacy, can be used to identify new cases quickly and verify those who are immune.”
Workwolf invited Canada’s government to use its proprietary blockchain to track Covid-19 cases, resistance or immunity, as well as test results. Vital Chain will turn clinically certified results into a blockchain-based safety and health certificate for employees, to prove their fitness to return to work.
We could use these capabilities on a global level to capture one, complete account of global incidence rates, and outcomes. This would be verified and secure. This is what Hacera, a start-up, aims to achieve. It launched MiPasa with the support of IBM and Microsoft, Oracle and the Linux Foundation. This initiative aims to integrate, aggregate and share information on a global scale using multiple verified sources. MiPasa connects with data providers via Hacera’s unbounded network. This is a decentralized blockchain powered through Hyperledger Fabric. Data is then streamed using the IBM Blockchain platform, IBM Cloud, and finally, MiPasa uses that data to create a new data provider.
Hacera created a tutorial to help coders build applications on the platform. This type of value creation is what makes it possible to gather many institutions to help us trace people’s exposures to infected people, reduce transmissions, save lives and get more people back on the job.
It is of paramount importance to find a Covid-19 vaccine. The blockchain startup Shivom is working to accelerate discovery. This global project will collect and share virus host information in response to an EU Innovative Medicines Initiative call for action. Shivom scientists created a multi-omics data hub consortium that includes universities, medical centers and companies. This is all to combat coronavirus infection. The data hub of the consortium is built on part Shivom’s Blockchain-based Precision Medicine Platform. Shivom was founded by Dr. Axel Schumacher.
The platform uses blockchain to not only manage patient consent dynamically, but also to securely share genomic data and analysis with third parties, anywhere in the world, without allowing access to any raw genomic data. Dr. Schumacher stated that researchers can run algorithms on the data to provide summary statistics. Without the consent of the patient, no individual or de-identifying data may be obtained.
Blockchain In Health Data
We must address the root problem to realize this future: you don’t have control over your virtual self. Every person needs a digital self-sovereign, inalienable identity. It can be enforceable in all contexts, online and in person, and it cannot be rescinded by any central administrator.
Before blockchain, we didn’t have the technology to claim such sovereignty. The technical foundations have been laid. The technical groundwork is now being laid by organizations. They are currently looking at how to implement it in public key infrastructure. How to separate identification and verification from transactions. And how to expand smart contracts, zero-knowledge proofs, homomorphic encryption, and secure multiparty computation.
Imagine a digital identity stored on a blockchain in your digital wallet. Your digital wallet protects your financial, biological, and geospatial information throughout the day. You decide how to use it. This identity is centered on your medical records. Your body produces health data. Your body generates health data, and not governments or big corporations. Clinicians measuring you or taking tests of different types are providing a service. Your body’s results are your assets. It is your responsibility to control it.
We want to see a complete shift in the way we assign ownership to data assets, as well as how we manage and protect our identities in a digital age. We can change everything if we change these rules.