Can the blockchain revolutionize the management of medical data?
15 May 2019 | Written by Adriano Fontanari
We talked about it with Glenn Zimmerman, Chief Communication Officer at Hu-manity.co, a startup using blockchain to enable consumers claiming the ownership of their medical data
Blockchain is considered a revolutionary technology that will positively impact many fields, including the medical sector. Many startups are using blockchain to store medical records enabling the user to have more transparent and easy access to his / her data.
Hu-manity.co uses a different approach, instead of storing medical health records, it is collecting consents on how the user wants his / her data to be used. We talked about it with Glenn Zimmerman, the Communications Manager of the startup.
What is Hu-manity.co and how is using blockchain to tackle the ownership of data?
Blockchain right now has been considered and discussed by a lot of organizations as a way of solving some challenges in healthcare. The big thing to be addressed is the difference between ownership of data as a human and ownership of data as an organization.
There are, indeed, differences between the US and Europe (with GDPR) and some consistencies, but nowhere in the world is the data fully aligned with the ownership by the individual.
So far, blockchain has been used to secure the data or to make it more private, and this is a large effort, though. Another point to be considered is data flow to make sure healthcare systems have the right amount of data to drive research.
Hu-manity.co will not change this, the current places that collect the data, the data brokers, the aggregator, do not change. Instead, it is offering explicitly consented data, something that is new in the data industry.
When people sign up to Hu-manity.co they have the opportunity to claim their data as their property. By doing so, they will receive a digital label for their data, much like people have a digital title for a car, for a boat or a house. The app enables people to decide how they would like their data to be used. For example, an individual can decide to support cancer research by giving his /her billing history and prescriptions but not sharing his / her medical consultations.
How is data ownership different between the USA and Europe?
The big simple differentiation is who owns the data. General Data Protection Regulation(GDPR) doesn’t claim data ownership in terms of the property, it does say that the control of the data belongs to the individual, meaning that the individual whose data is collected in Europe has the right to ask the data collector which data it has about him/her.
In the USA there is a business-centric point of view. The interpretation of the Health Insurance Portability and Accountability Act (HIPAA) which basically defines how patients data can be used, states that the data collector (e.g. the hospital, the pharmacy) is the one that has the control and the ownership of the data.
What is your vision in this regard?
Hu-manity.co believes that data collection should have nothing to do with data ownership. Now the data collection process in the USA is as it follows: the patient goes to the hospital, he/she gets a procedure done. Afterward, the procedure is documented in a health electronic record. This document is partially de-identified (e.g. the name) and then handed over the data broker, usually a large company, that sells the data for research or other purposes.
The Hu-manity.co platform is currently designed for the US Market, but the vision is to be active globally, thus Hu-manity.co has already offices in Europe as well.
How Hu-manity.co is going to change this process?
Hu-manity.co offers the opportunity to let people decide who their data will be used. For instance: the individual can choose to support only cancer research. These decisions are the ones that are recorded on the blockchain of Hu-manity.co.
The next step, when Hu-manity.co has 100K people that express their choices, is to go to Electronic Health Records companies and offer explicitly consented data in other words, data that the patients said OK to be used for specific purposes and are open to being contacted by research centers if they need more information.
How does Hu-manity.co work concretely?
This is put into practice by adding a little bit of code of the permission of the user to the electronic medical record. From that moment, every record going on the other side, where research and pharmaceutical companies want to buy it, shows which permission the user gave.
Companies can connect with these people since data is now richer and it allows to drive much faster, efficient and also better research, eventually leading to more cures. The process is always pinned back to the Hu-manity.co blockchain, this means that whatever data is sold the blockchain knows it and the patient will receive compensation for the data.
The big point is that Hu-manity.co is not holding anybody’s data. In that sense, Hu-manity.co can be seen as an agent, collecting the choices about people want their data to be used and connecting the dots by showing to companies the opportunities that this means.
Why Hu-manity.co is using blockchain to do this?
The big terms when talking about blockchain in healthcare are trust, transparency, track, and trace.
In the healthcare industry, right now, when the researchers are receiving the data there is no way with a 100% certainty to know who the other person is, whether the data is accurate. It is really hard to connect the data, though.
Hu-manity.co is offering 100% verified data since there is a real person on the other hand of the blockchain. So that creates this idea of trust and transparency and, on the other hand, track and trace, which is the other beautiful part of the blockchain.
Furthermore, blockchain is decentralized, that means, it is independent of governments or other organizations. Hu-manity.co is using blockchain to actually empower people with a right they have never had before.
What is the #My31 movement?
According to Hu-manity.co the ownership of the data must be up to the person, for this he launched the # M31 movement.The idea is a new right to be added to the United Nations Universal Declaration of Human Rights of 1948. This right is that everyone should own their data as their property.
The average value of a person’s data is around 100 and 200 dollars per year, this just for medical data. It is important to point out that everyone is generating more and more data and the value of it will grow exponentially. It is fundamental for the individual has some control over the data he/she generates. Hu-manity.co envisions a future where data could become a currency. It is a different perspective, similar somehow to the fair trade coffee. No one is hurt, no one is taking advantage of, everyone receives market compensation.
Social networks and search engines are not actually free, the user pays with his / her data for the service. In the healthcare industry, at least in the USA, the patient is paying for the for the prescription, for the doctor visit, for the hospital visit and still, the data is sold without giving compensation. Hu-manity.co believes that this has to change.