Well, I think I’ve converted. The more I learn and think about what blockchain technologies makes possible, the more convinced I become that if properly applied, blockchains could revolutionize and reinvigorate medical research. At the very least it is an experiment worth conducting. I’m sure I’ve got some details wrong, but if nothing else I hope to inspire more people to think about how blockchains can help medical research and how best to implement it. (click here if you missed part 1 of my adventures in blockchain land)
First, what is a blockchain again and what does it do?
Blockchains are distributed and secure ledgers of transaction. It enables all stakeholders to privately and securely share data while properly incentivizing everyone involved to contribute to a dynamic and evolving ecosystem without need for central authority.
Right…why is that worth me trying to figure out?
Cus the way we do things now sucks. I am referring mainly to the part of medical science I know best, neurodegenerative research. The system that operates it was built to treat acute disease, it is not fit for the development of treatments nor the management of care for individuals with chronic degenerative diseases. It has created a therapeutic pipeline that takes 20 years to get through and has to date produced zero disease modifying therapies.
What’s more, as things are patients are just subjects in a system, serving mainly as guinea pigs from which to extract data, with little to no agency. The least we can do is be open to new ways of running things.
So, what is this new way?
In the case of neurodegenerative disease research it might look something like this…
I believe something like the above would be a more stream lined, egalitarian and effective way to organize this community and make decisions that are in the best interest of all stakeholders. But, there are a lot of details missing, to cover it all would probably require a dissertation length piece. A lot of careful thought needs to be put into governance and regulation and ethics and so much more. For now I’ll just quickly cover the economics that would drive this system.
The monetary policy of the system must be nimble enough to change over time in step with the growth of its community. The good news is there are architectures for this being built that we can pick and choose or just learn from, like Ethereum and Cardano (I am partial to the latter). But there are other potentially viable options and picking the right one to build a neurodegenerative ecosystem on would be a crucial first step.
The basics of how I see it working is that patients would get tokens for uploading their data as well as each time they allow a researcher access according to terms set by the smart contracts they enter into. Researchers would also get tokens for uploading data, as well as the impact and translation of their research, and creating tools/applications that are useful to the community. Regulators and ethics counselors will probably need to be elected and compensated in tokens for their time as well.
You may be asking yourself, who wants made up digital tokens? People want money. This is probably where I am most likely to lose some readers, but I believe these kinds of cryptocurrencies will inevitably replace money. They are a more efficient, more secure and less corruptible means of distributing wealth and assigning value. It will take time, and there will be plenty of moments when it looks like it is crashing or when it gets disrupted by external forces, but I think it is more robust and sustainable long-term.
Good time to emphasize that what I am proposing here is in no way an overnight fix, this will take years to develop, incubate, iterate and then implement. But it is worth doing. The price we pay for not trying may be much steeper.
A New Social Contract
Again, this is an experiment in organizational behavior. It will require patience, likely taking years to roll out and then even more time before it starts bearing fruit. Eventually an organization of some kind should be set it up that can really start pushing this forward and getting it to the point where at a pre-specified date they can step aside and let the network, if properly set up, run itself.
One thing I want to make clear to anyone who wants to get more involved is that in essence you are entering into a new social contract. Anything you invest, whether it be your time or your money, is not something you should expect a return on. Though there are plenty of very profitable businesses that have been built on similar models. Also, there is a fairly steep learning curve to overcome.
There are a lot of resources available to anyone who wants to learn more. I have started to get the ball rolling with a stake pool on Cardano. If you would like to engage in our discussions join this Telegram group, here is a short video on what we are trying to do.
A few more notes
In practice for most patients and researchers this system would eventually look something like this…
To get this going, a think tank/organization should form comprising representatives from all stakeholders to decide: (along with cryptographers and various other experts outside the field)
- Which blockchain to use (or build anew)
- Governance of blockchain and community fund (policy makers, social scientists ..)
- Monetary policy/Tokenomics: Market size, distribution, staking pools (economists, crypto currency experts…)
- Smart Contracts: Create a couple templates to be used (lawyers, ethicists, ..)
- Build infrastructure to allow interoperability, fungibility and harmonization of all the different kinds of data (Data scientists, ..)
- Potential side chains/dApps: Basic science data networks, Clinical trial registry, social network
Well, that’s all I got for now. Will continue to dig and see where this rabbit hole goes.
Excellent leads. It would be a little heavy for me and working it into my schedule. I suspect not all, but many with a neurodegenerative disease might say something similar.
But definitely sounds worthy of PD organization time on our behalf. In fact, one could argue a foundation the likes of Fox needs to be following the evolution from the front row as part of someone’s job description.
You wouldn’t think empathy would have much to do with block chains. But I’ve discovered empathy has to do with everything. When medical researchers and providers begin to truly feel our pain, we will then be on a different level of progress. Although this comment has nothing to do with your post, perhaps if we emphasize with them and all others first…