‘Using patients’ health data must be transparent, traceable, secure, and respecting their privacy’ – an interview with Schallum Pierre

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Kasia Pieniądz interviews Schallum Pierre, the president of REED (engl. DEEN - Data ethics expertise network), a nonprofit corporation that fights for the empowerment of the citizens at the center of everything related to the use of their data.

By Kasia Pieniądz


Before co-founding DEEN, Schallum Pierre co-created the company Blockchain Citiz, which developed, in a collaboration with the Centre Hospitalier de l'Université de Montréal, a blockchain use case for chronic disease self-management. In a conversation with Swiss-Polish Blockchain Association he talks about the potential benefits of using blockchain technology in healthcare.


Dr. Pierre, blockchain is considered to have great potential in the healthcare industry. Researchers and enthusiasts of this technology mention electronic medical records, pharmaceutical supply chain, remote patient monitoring, and health insurance claim, among multiple use cases. What is your opinion on that? 

There is no doubt that blockchain offers many exciting perspectives on the healthcare market’s needs, but above all, it must meet citizens’ needs to improve their well-being. REED (Engl. DEEN - Data ethics expertise network) targets the problem of chronic disease. Our recent article explains that 44% of the Canadian population lives with one or more chronic diseases, which cause 65% of deaths in the country. One of the reasons people die is the cessation (momentary or prolonged) of medical recommendations. Besides, non-adherence to treatment causes multi-morbidity in health care costing 16.14 billion euros each year in Canada. Together with the University of Montreal Hospital Centre, BlockchainCitiz, a company which I am the co-founder of, created a blockchain-based platform that helps people with chronic diseases in following medical recommendations and controlling their data. In this sense, blockchain can help the patient follow his or her data on a daily basis, ask family members or friends to encourage him or her to follow medical recommendations, securely. So, in this case, blockchain supports the patient's goal of treatment compliance.


Sounds interesting. What’s the story behind this idea? Could you reveal some details about it? 


Blockchain Citiz conducted a survey in Quebec, Canada, among physicians, health managers, and patients with chronic diseases that revealed the problem of non-adherence to therapy or the temporary or prolonged suspension of medical recommendations. Our team identified three other problems related to the control of patient-generated data, the storage of patient data from multiple platforms that are not interoperable, and the security of data endangering privacy. We created a platform that allows patients to easily collect their data either manually or via connected objects. Patients can also share their data in a secure and granular way. The solution is ethical by design. It gives the patients control back over their data because they can determine how long they want to share it and end access at any time. 


How big is the scale of blockchain usage in Quebec’s healthcare? 


There are several blockchain applications in Quebec, like Jami, that use Ethereum and Eva based on EOS. But in healthcare, our proposal is the first, and it is very challenging to apply blockchain there. Quebec's health network has not yet been computerized: even now we use fax to communicate. Then, there is a minor investment in the development of blockchain. In this context, it is challenging to switch to the blockchain, a disruptive technology. Upstream, REED is working on implementing an ecosystem open to the respect of privacy. We can combine blockchain with other technologies to protect citizens' data from an ethical perspective. REED aims to support private and public organizations that wish to have good data ethics practices and consider the blockchain a relevant technology to protect privacy. We have gained experience that we want to share with Quebec's health network.


I would like to focus on what blockchain could mean for our health data. As CEO of REED, you know perfectly that in many countries, patients who create the data have limited access to it or, even worse, do not have it at all. It seems to be deeply unjust because third parties trade and track health data just like consumer data. On top of that, health data is stored by various institutions on not interoperable platforms that are vulnerable to hack. How could blockchain help with these issues? 


At REED, we have published an article on that subject. In Quebec, Canada, there are many health informatics systems. But they operate in a silo and parallel, without communicating with each other. For example, over the years, various platforms have been adopted without thinking about interoperability. There is the health booklet, the Quebec health record, the Quebec health appointment, the Quebec vaccination registry. Each of those services is using separate databases. The BlockchainCitiz solution I have mentioned offers patients the ability to federate all the data they generate and store in multiple platforms on a single, highly secure network. Besides, patients have control over their data. They can determine with whom they share data and for how long. Consent, security, and traceability are at the heart of our proposal. Patients can also share their data in a granular way with their doctor, a researcher, or a company wishing to conduct health research. We have just published an article (in French) titled "Blockchain and health: use case for chronic disease self-management" in Les techniques de l’ingénieur journal, which presents our solution.


Can we expect a massive resistance from companies collecting our health data that will delay both blockchain implementation in healthcare and empowering patients? I can imagine that there are stakeholders not interested in improving patients' data ownership and privacy. 


I don't know if it can be massive, but yes, we can expect resistance - it wouldn't be surprising. We all know the principle of resistance to change. However, other companies are afraid of missing the opportunities. That's why some are investing heavily in blockchain technology. Several large companies have already developed their solutions. IBM already has proposals. Microsoft and Amazon have even created BAAS or Blockchain as a service. If we use the blockchain more and more, some large companies eventually change their business models. We can already observe it on social media e.g., with Steemit, a social network using blockchain technology with a different business model than Facebook. Steemit encourages users to produce quality content, evaluated in a transparent voting system - it remunerates the content with the most positive votes. Instead of selling the user's data, it is rather the user who pays for his interaction and impacts the purchased vote. 


Should we work to raise individuals' awareness that health data is a powerful asset? 


Yes, I agree. Citizens need to realize the value of their data. When citizens are aware, they can make informed decisions to choose companies that respect their data. People need to be in charge of sharing their data, have complete control over who will have access to it, and can stop sharing it whenever they want. Using individuals' data must be transparent, traceable, secure, and respecting his or her privacy. According to some entrepreneurs, the monetization of citizen data by the citizen can be an incentive for blockchain adoption. Even so, the monetization of citizen data poses ethical problems. In fact, several associations such as La Quadrature du net militates against the monetization of personal data. In his book Cyberstructure: l'internet, un espace politique, Stéphane Bortzmeyer underlines a relevant point: a supposedly personal data is in fact attached to a “social graft”. Consequently, a person cannot decide to monetize his or her data without the opinion of the other individuals involved.


Do we need new regulations, social campaigns to educate people about ethical data use - or has the existing framework enough capacity? 


Many countries are working on regulations to protect citizens. We need it so badly. There is the General Data Protection Regulation (GDPR) for the 27 member states of the European Union. Quebec has proposed Bill 64 becoming the Canadian leader for data protection. After Quebec, Canada also has its Bill C-11. California passed the California Consumer Privacy Act (CCPA) last year. Likewise, Brazil adopted the Brazilian General Data Protection Law (Lei Geral de Dados Pessoais–LGDP). However, to be viable and effective, regulations must consider the views of all stakeholders: the states, of course, but also users, technology developers, network operators, hosting providers, service providers, and technical standards associations.