The stories about the origins of the Healid Project…
Bert – Founder
My personal story to invent Healid: Discovering how a convergence of new technologies could be the ultimate enabler to successfully battle genetic diseases.
The DAF – A Distributed Autonomous Foundation
Healid is to be governed in a bottom-up and distributed manner that is largely self-organizing, just like Bitcoin, for example. Unlike Bitcoin, though, it also needs to be clear and transparent. And we want (and need) to be able to make decisions, transparent, and without forks and splits.
DAF
Such governance needs to:
- Facilitate and enable decision-making
- Enable broad representation of interests across the community
- Provide consistency in direction
- Be consensus based without leading to persistent stalemates, and
- Limit outside influence with code logic not being subjected to any specific jurisdiction.
We propose to establish a Distributed Autonomous Foundation (DAF) as a system of formal governance for Healid and HealCoin activities. The principles based on which this DAF is governed should be valid from the moment of HealCoin issuance in form of a Genesis Block. The DAF rules will be encoded in a smart contract and therefore autonomously and automatically enforced. Like with the Healid platform itself, the mechanism for aligning interests and making decisions is in our case based on HealCoin ownership.
It is invariable that during the course of the Healid project a number of decisions will need to be made, for the project or for the Foundation. Those range from management, financial, and funding matters to code changes that facilitate added or modified functionality, bug fixes, performance improvements, or price-setting for storing, processing, and accessing Healid data. The DAF will ensure maximum transparency and clarity for all stakeholders when such decisions are made.
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Frequently Asked Questions
In theory it can scale more than any alternative. In reality this will need to be sufficiently proven in our Pilot.
The main premise of distributed data storage is its taking out the “middleman” – the intermediary. Dropbox, Amazon Web Services, and the Google Cloud are all centralized in a way and controlled by one business. Having that said, even they could in theory also become a part of a distributed data storage solution. This would be on top of any other unused storage space that will be targeted anyway. The main advantage of distributed data storage is then the unique scalability of its storage volume and the access to any kind of storage supply, by definition exceeding any of its sub-components. This then also lends itself to “fog computing” which takes advantage of geographical proximity, leading to improved performance.
The result is more, and more flexible, supply. If properly implemented this should result in clearly lower cost, more flexible use cases, and overall higher performance. This is the theory and it is not a new one and has been proven in reality within some constraints.
Healid’s Pilot will need to prove that it can scale out as a low-cost, flexible, and high performance solution to take care of the massive data volume required for our initiative. However, even if we would encounter challenges to the low-cost aspect when the data volume grows too fast, the offering of a massive enough data set should be enough of a value to researchers to make accessibility economical for that reason only.
Beyond the formal launch of the HealCoin and of the Healid Distributed Autonomous Platform (Healid DAP), Healid is not run as a business. Rather, it is self-sustaining. Its value is the supply of the by far largest and most diverse genome database, and easy access to this data. The Platform enables researchers to access valuable data on a previously unthinkable scale AND provides a mechanism to use the related computing platform for research and computation. Supply, ease of use, and tools will drive demand for the use of the Healid platform.
In principle, the Healid platform can be used for much more than genomic data. By design it already comes with the ability to include meta data like gender, age, ethnicity, family and medical history. In theory, such meta data could be expanded to include any other kinds of health records associated with individuals.
Such data is much more diverse, and somewhat ironically much more personal and immediate, generated through direct interaction with health care providers. While not closing the technical ability to go in such a direction at a later stage, we consider it important (and challenging) enough to focus on genomic data for the time being.
The Healid platform could also be leveraged to enable ad hoc calculations in the medical field and even beyond. Examples are gene sequencing of bacteria, plants, animal DNA, or RNA. Again, though, while we keep the doors open to leverage our platform in that way, we will initially focus on the generic human genome.
The HealCoin is a token enabling the effective and efficient working of the marketplace of medically related genomic data. It provides the common “currency” to enable people and researchers from about 200 countries to exchange data and computing capabilities so that health value can be created.
The size of data sets that researchers nowadays typically access is limited to dozens, sometimes hundreds, and even more rarely thousands. This significantly reduces the reliability of results. Once millions of diverse data sets are accessible through an easy-to-use platform, finding and narrowing down data can be as simple as entering the correct search criteria (“give me a random set of 12,000 genomes of females, age 20 to 25, and an ethnicity split of 20% caucasian, 40% asian, 40% others”).
The sheer size of the data set makes it much more suitable to really take advantage of one of the most significant technological advances of the past decade: artificial intelligence (AI) deep learning algorithms. AIs need large data sets, and they are good in what humans cannot do well: sift through billions of letters each, for hundreds of millions of records to find patterns, and learn.
When you upload your genomic data, you benefit on multiple levels. One immediate reward is that you receive HealCoin tokens whose value is likely going to appreciate as the network grows and ever more value is created. Independent of the coin, though, overall every person benefits from the finding of genetic triggers for diseases.
Once patterns between portions of the genome and diseases have been found through artificial intelligence algorithms, this opens the door to use advanced gene editing technologies like CRISPR/Cas9 to test treatment options and cures more specifically.
By design of the Healid platform, this knowledge can be automatically linked to relevant data sets – which are of course associated anonymously with individual humans.
Healid establishes the infrastructure for an efficient market which greatly reduces the cost and increases the quality of the outcome of research and development for about 7000 genetically triggered diseases. Reduced costs and improved output is equivalent to overall tangible value. The challenge is mostly one of scale. This is addressed by Healid.
Currently, similar markets do in very rudimentary form exist, with great limitations, e.g. for clinical studies. Sample sizes often are measured by the dozens, and it is an arduous process to narrow down selections of meaningful subjects. By introducing a bottom-up process and making massive amounts of potentially meaningful data publicly available in an anonymized form, but authorized by individuals as owners, key research processes can be as “simple” as tapping into this database. This introduces almost unlimited scalability, without most of the currently existing restrictions.
At the same time the global scale of Healid does profoundly expand the market size for treatments. Instead of hundreds or thousands, now millions of people can find out about treatment options or cures – or on the flip side of this, researchers and businesses can work for a much larger market, at much lower cost. Economies of scale introduce efficiencies on all levels.
In the medium and long term, the value for society is dramatic: The reduction in research and development costs enables the addressing of risk factors, thus reducing the severity of diseases, or even their onset. Health care costs should significantly be reduced, globally.
Once established and gone live, the Healid Platform will be run by its stakeholders. The economic model ensures that everybody benefits by receiving HealCoin for sharing data, sharing meta data, providing storage space, or providing computing capabilities. Users of the data (researchers, labs, businesses) pay with HealCoin. The Healid code itself is run by a Distributed Autonomous Foundation (DAF), run by qualified majority of HealCoin owners.
Most of our data will be kept off-chain. We only have very limited use for existing blockchains, including the currently biggest one, Bitcoin. This is mainly due to the inherent limitations of the centralized nature of a single blockchain. Decentralized as its nodes are, there is only one blockchain and thus a potential single point of failure. This single blockchain needs to reach universal consensus about all transactions at all times. This also turns it into a matter of scalability. Since its inception in 2009, the Bitcoin blockchain has recorded about 250 million transactions. This is dwarfed by the need to store, update, and retrieve billions of records. The Healid approach uses a more genuinely distributed approach, although certain aspects of currently existing blockchains will be leveraged.
Using centralized cloud storage creates a number of issues. Existing cloud storage solutions do centralize data storage. Such centralization creates trust issues (Who can access my data? What laws govern my data? Is the price fair?) and technical issues due to the inherently hierarchical nature of at least some aspects. Additionally they lack the scalability that decentralized solutions do have.
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