It’s Time To Treat Health Data As A Public Good
What French privacy laws get wrong about health data
Every country has its own interpretation of data privacy. France, for instance, has taken a wary stance, with regulators quick to stand up in defense of individual privacy. The question of data ownership is largely ignored — often to the detriment of the common good. More and more, this hardline, patrimonial approach is seen as a way to give patients more control of their own data.
When it comes to monetizing health data, however, the challenges only multiply. Some countries may choose to ban it as a way to prevent commercialization, albeit indirect, of the human body. However, this “privacy over all” policy paradoxically leaves individuals vulnerable to possible breaches among new health actors like Google and Facebook. We should therefore not confine ourselves to sterile debates, and instead design a shared solution that benefits all actors of the health community.
Data in a changing world
The world is changing: you don’t have to look farther than the idea of the quantified self. New applications, with their ease-of-use and seductive design, are often free for users and don’t typically involve data sharing. The truth is: our health indicators are available on our smartphones and we can’t even access them, analyze them, or share them with the health organizations of our choice. By accepting the terms and conditions of these apps, we lose power over information that could be of vital importance to collective life.
Modern society is at a crossroads. We can choose strict regulations in order to protect data privacy at all costs. Or we can decide that health data is a common good, akin to water or air, and should be treated as such.
Health data: a public good?
Why should we treat health data as a public good? Firstly, improved population health data could be an indisputable benefit for society. It was for this reason that governments launched the first public health campaigns, making vaccination compulsory and alerting the public to certain health risks. If we let states, protectors of the common interest, organize and manage the circulation of data, various security issues may arise.
For one thing, centralizing health data could have dire political consequences. National regulations regarding centralized health data would furthermore be more detrimental to science than a boon. For example, medical research is often conducted in parallel across multiple countries, helping to increase diversity and sample size. Similarly, big tech companies like Google and Facebook are not limited to state borders. Our goal should then be to develop a collective response as rapid and efficient as theirs.
Like economic Nobel prize winner Elinor Ostrom once said, a public good must respect certain principles. First and foremost, the good and its constituent community must abide by clear and coherent rules. Member participation is also paramount. And when it comes to health, participation should create a community space involving a variety of actors, from health professionals to patients and government authorities. Each actor would have a clear role and would be held accountable to the other parties.
The importance of patient-centricity
In any case, patients must be at the center of all data circulation. We can ensure this by hosting their personal data via secure solutions. No platform would better serve the patient’s ability to control the circulation of their data than a distributed server network run by blockchain technology. This would allow patients to control how their personal data is being used, encouraging its applications in open source research, personalized treatment, and even monetization.
Multiple health communities have already begun to emerge. Their goal: put in place competitive coops in order to find the most ethical and efficient way to exploit health data.
This could one day give way to new types of blockchain-based organizations, such as DAOs (Decentralized Autonomous Organizations). Governance of these organizations would be determined by tokens based on participation by all members of the community. Tokens could potentially allow patients to be reimbursed for their data, co-finance a study or even demand more research within a specific field via tokenised voting.
All things considered, we shouldn’t make the mistake of fetishizing health data. We can still encourage scientific discovery and innovation as a result of health data sharing. Ultimately, the value of personal data depends on our collective imagination. An ecosystem-based approach could be our only defense in protecting the health sector from total control by the tech titans of our day.
Sunny Lake is a blockchain-based platform for accelerated clinical research. Our goal is to create a secure, transparent, and collaborative clinical research ecosystem. To get in touch, contact: jcdespres@sunnylake.io
