A note on achieving data self-sovereignty
Don and Alex Tapscott, who co-founded the Blockchain Research Institute together, and have written several books on blockchain technology, penned an article for the Harvard Business Review on the need for self-sovereign health data called “What Blockchain Could Mean for Your Health Data.” They identify five problem areas, access, security, privacy, monetization, and advocacy, that could be solved if we “owned our medical and other personal data.” This piece does a good job explaining why people should care, and they highlighting the efforts of pioneers like Canada’s University Health Network to achieve this goal.
What I think could have added to this piece was a discussion of the economic and social conditions that might bring about data self-sovereignty. The problems in realizing data self-sovereignty are not only technology, but the incentives and very structure of the status quo. If we added a blockchain to today’s EHRs there would still be a massive gap between the individual and the custodians of our health data. These custodians have conflicting incentives with their patients and their power is too vast for individuals alone to rally for meaningful change. Furthermore, informed consent, which is the principle model for individuals to “manage and own” their data today, structurally benefits these custodians due to the well documented cognitive burdens it places on data subjects.
Realizing self sovereignty over our data will require new economic and social systems in addition to technical ones. What those systems look like is a trillion dollar unanswered question, but we might glimpse some of their future outlines today. The RadicalXChange Community imagines a system of data cooperatives that would have similar functions (collective bargaining, quality certification, training education) to the data economy as labor unions had for the industrial economy. These would offer a natural counterbalance to the power of today’s data custodians, alleviate some of the burden of managing your data in thousands of contexts, and provide a dignified way for people to develop mastery in a future data economy.
Projects working at the intersection of crypto and data way also offer us hints. NumerAI uses novel economic incentives (crypto + staking) and technology (homomorphic encryption + meta models) to create a crowdsourced hedgefund. I highlight this because they have decoupled data analysis from data ownership, thus giving smart data scientists the ability to directly monetize their talents without needing to capture proprietary data first. A product from the same team, Erasure Bay, works in a similar way to enable the requesting and monetization of more general information. It is the most used “information marketplace” that I know of. In late March an analytics company requested “30 CT scans of #covid19 patient's lungs exhibiting "ground glass opacities","consolidations", & "crazy paving patterns" and offered $30 as payment. Incredibly the request was fulfilled 42 minutes minutes later.
But again, these examples are relatively early and I don’t want to mistakenly make it seem like I believe these are the definitive model for data self-sovereignty. Instead I am highlighting them because they offer novel economic, social, and technical alternatives to the status quo. It is precisely that combination of the three that is needed to achieve data self-sovereignty, and it is very likely that the system that does usher in data self-sovereignty will look very different from the status quo.
If you think you are building that system, or know of an alternative I should hear about, please reach out.
What I’m reading this weekend
In late March I wrote a missive on optimism and pessimism in the context of the COVID-19 response, arguing that we must reject the apathetic extremes of both poles and seek the narrow path between them:
Weeks ago the dominant mood was one of blind optimism that coronavirus wouldn’t strike here, and if it did, it would certainly “go to zero quickly.” Now fatalistic pessimism is being pushed by those saying our reaction is too late and the virus is too strong for us to do anything about it. Though blind optimism and fatalistic pessimism are extreme opposites, they both end in apathy. If outcomes were predetermined then there would be no need to act, and we could abdicate any responsibility for what is to come…
Great leaders of the past have understood this and sought the narrow path to organize and energize people to meet the challenges of their times…
Today we must do the same and pursue a middle way that rejects both blind optimism and fatalistic pessimism. It is only by pursuing this narrow path, one that will be hard but possible, that we will be able to overcome the immense challenges we face and thrive in a period of restoration.
Since then we have swung from one extreme to another, and now dominant mood is again one of blind optimism. One top health official, in the midst of rising new cases in their state, said “We are not going to be able to stop the spread, but we can’t stop living as well.” This pessimism sets up a false dichotomy. The truth is that we can both stop the spread and keep on living, but we don’t have the will to do so.
We know more today than we did in March, others have set examples for us to follow and many plans of action have been proposed, but our problem today is the same as it was then. We are succumbing to blind optimism or fatalistic pessimism, when what is needed is to pursue the narrow path between them that leads to sustained vigilance and action.
Variant Bio is trying to make gene therapies using the DNA of rare and/or extraordinary people, like the communities who can thrive at very high altitudes. By definition that means they need to work with communities that a biotech community usually isn’t working with, like the Sherpas of Nepal, and there is a long history of researchers abusing vulnerable populations like these. So much of the article focused on their attempts to ensure the work they are doing is done in the right way.
The article states that Variant does so by working closely with communities and their leaders, hiring anthropologists and ethicists to mediate, and funding local healthcare and education, as well as projects of the communities’ choosing. In addition the company intends to share “profit over the long term from data-sharing and drug revenue once the company has therapies for sale.” Furthermore, a consultant that has worked with them says Variant must compensate the data sources specifically, and that people should receive free or subsidized access to any drugs they develop.
It would be remiss of me not to connect this to the above discussion on data sovereignty. On one hand, there are vulnerable people with valuable data. On the other, there is a commercial entity that wants to use that data to develop new therapeutics. Community institutions and leaders as well as anthropologists and ethicists mediate the interaction between individuals and Variant, thus providing both context and a counterbalance to power differentials. It is reminiscent of the idea of data cooperatives, and properly done could lead to more equitable outcomes for everyone.
IOHK is the team behind Cardano, a smart contract platform with some novel technical features that launched in late 2017. My personal observation is they have long had a small, oddly vocal, and zealous community but haven’t been able to convert that to broader adoption.
It’s notable that they joined Hyperledger, that signals an interest in enterprises and open source community development more broadly. Moreover, they are likely interested in having a Cardano client adopted as an official Hyperledger project. I wouldn’t be surprised if we see a rush of similar projects trying to do the same in order to drive adoption of their technology.
For all the talk of digital dollars and stablecoins, I still think that their importance is generally underestimated. I am partial to Nic Carter’s view that public blockchains could export dollars and help further solidify the dollar’s dominance worldwide. With unprecedented money printing worldwide this is a space I am watching with interest.
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