The YouBase Case Study: Managing Genetic and Health Data on the Blockchain

Opportunities for advantage will be created by the exponential disruption of the industrial base (including that of defense) coupled with exponential biotechnology innovation to build the bioeconomy of the future. The creation of this technology and the business ecosystem of the future is already underway. As OODA CEO Matt Devost observed at OODAcon 2022:

“Another topic that I have flagged is the advancements in the biomedical space as well. Every Friday I participate in a two-and-a-half-hour phone call around innovation in all of these areas. And the biomedical, I feel, is accelerating at this crazy pace – with what we’re able to achieve with CRISPR-type technologies, new therapies, and our understanding of disease. It will be incredibly disruptive.”

We will continue to track this space right through our annual event, OODAcon 2023, where we will have a panel devoted to the theme of:

OODA Loop Sponsor

Hacking Humans – The New Genetic Frontiers

There have been groundbreaking advancements in genetic engineering and new medical technologies are poised to disrupt the dialogue on health, ethics, global security, and the future of humanity. This session will explore disruptive technologies, such as the revolutionary CRISPR gene-editing tool, breakthroughs in synthetic biology like Xenobots, and the emergence of exponential medical treatments that demonstrate rapid adoption properties.

Exponential Innovation and Building the Bioeconomy of the Future

In this post, We resume our efforts to understand the risks and opportunities in this exponential industry sector by taking a look at a seminal case study by the Blockchain Research Institute on the future of patients owning and controlling their medical data – all on the blockchain. This research is also part of our current series on the Future of Blockchain.

Medical and Biopharma Research: Managing Genetic and Health Data on the Blockchain

A Blockchain Research Institute Lighthouse Case Study by Michael Scott (BitMediaWei LLC)

Foreword

At the Blockchain Research Institute, we believe that distributed ledgers will change the world, and innovative medical research is an excellent method to do just that. Traditionally, medical research is wrought with red tape around data collection, data management, and other policy and privacy concerns. Individuals are usually unable to collect the value of their contribution even if their blood or tissue is used to generate insights. While the pace of medical innovation is accelerating, the discovery of cures and new treatments is still slowed due to the difficulty of identifying potential participants in research.

This investigation illustrates how innovative blockchain start-ups such as YouBase can improve medical research and development. YouBase enables individuals to control their medical data and generate value by sharing it with researchers in a manner that ensures patient privacy and helps researchers to find subjects who meet all the qualifications for a clinical trial. Combined with artificial intelligence and the Internet of Things, blockchain also helps to improve treatment quality, diagnosis accuracy, clinical process efficiency, and data integrity. At the same time, medical research costs and system vulnerability decrease. We are pleased to work with Michael Scott on this project because he brings deep insights into both blockchain technology and healthcare. He provides a unique perspective that combines the sharp observations of a journalist with the sage evaluation of a practitioner.

DON TAPSCOTT – Co-Founder and Executive Chairman Blockchain Research Institute

Case in Brief

With the ongoing developments taking place in the fields of medical and bioscience research, data are seen as an essential element for future advancement.
YouBase, a blockchain-centric company based in Denver, Colorado, is at the epicenter of this movement as it pursues the goal of giving patients power over their health data.
Healthcare consumers do not have sufficient access to their own data. YouBase’s primary aim is to provide individuals with a mechanism for achieving access to, and control of, their own medical data so that they can share this information across applications as they see fit.
Through YouBase’s model, individuals have their own digital wallets containing their encrypted health data. These users have sole control of their own data and can grant access to health systems and medical providers while keeping their identity private.
Clinical researchers can use YouBase to find anonymous data that fit the profile of the type of patients they’re recruiting.
Then, they can directly ask patients to participate in a research study or clinical trial they are conducting. Through YouBase, we can look at life-cycle factors influencing the integrity, security, cost, and provenance of medical data for research and clinical trial purposes.
This research highlights the emerging role of blockchain technology in addressing age-old data management issues that affect research and clinical trials taking place in the medical and pharmaceutical industries. (1)
We examine the blockchain development space, its potential applications for managing health data, and how it provides a viable roadmap for leveraging the intersection between blockchain and health data. (2)

Problem to be Solved

All humans have elements of immortality in their genomic and medical information that’s of value to health and medical science advancement.

In navigating the complexities of today’s healthcare systems, patients often face major challenges in terms of security and control when their information is transmitted between medical providers and organizations. With this comes ethical considerations in terms of the end use of these data, particularly for medical and biopharmaceutical research purposes.

The following story underscores how issues of integrity may factor into the provenance of consumer data. In 1951, a scientist at Johns Hopkins Hospital created the first immortal human cell line using a tissue sample taken from a young black cervical cancer patient. Known as “HeLa” cells (short for Henrietta Lacks), this human material rapidly grew in value in the medical research realm, amid a cloud of mystery in terms of who the donor was. In her bestselling book, The Immortal Life of Henrietta Lacks, Rebecca Skloot tracks the source of these cells while documenting the profound impact of cell lines on modern medical advancements. (3) These cell lines are referred to as “immortal” because labs can grow them ad infinitum, freeze them for decades, divide them into different clusters, and distribute them among scientists anywhere in the world. Despite the worldwide impact of this discovery, the Lacks family received no known remuneration for this groundbreaking contribution to science.

All humans have elements of immortality in their genomic and medical information that are of value to health and medical science advancement. This profound discovery has sparked a number of important questions:

What if each individual could maintain control of his or her data?
What if we and our heirs could exchange and manage our data in a secure and unalterable manner, thereby maintaining the integrity and usefulness of the information?
What level of value should we place on our own biometric data—or how should the market value these data; and should biopharma and other clinical research organizations compensate for the use of an individual’s data and potentially their cells?

“What if individuals were able to maintain control of their data, potentially selling it for thousands of dollars to medical researchers? – Leonard Kish, Co-founder and CEO YouBase

Many blockchain innovators in this space see value around the creation of a unified data resource for medical research—a cache of data that could be worth literally trillions of dollars, all guided by individual consumers. The mission of YouBase, founded by Leonard Kish, Josh Robinson, and cardiologist and digital evangelist Dr. Eric Topol, is to examine the intersection between health data and advancements in medical and pharmaceutical research. In Nature Biotechnology, Kish and Topol discussed this very objective. (4) Referring to patients as “unpatients,” they championed for individuals to have rights to their own medical data. That next year, YouBase was born. Said Leonard Kish, co-founder and CEO of YouBase:

“Every person is a walking storehouse of valuable health information. Not only do our individual medical histories impact our ability to buy health insurance, but our very DNA also contains clues into our future health outcomes. Our own health data is also of interest to the scientific community. What if individuals were able to maintain control of their data, potentially selling it for thousands of dollars to medical researchers?” (5)

Kish noted that many patients have suffered from not only a lack of data moving between providers but also their inability to care for themselves without the right data:

“The problems go from filling out those initial forms with a new doctor by hand to not having all your medications reconciled in one place. What if patients could sign into their own data locker and capture a complete picture of themselves, with those persons ultimately having the power to choose what data they desire to share across applications?” (6)

Data waste is another looming issue, according to Kish: When individuals grant authorization for a private medical research firm or public research institution to use their information in a clinical trial, researchers are often left without a means of contacting participants to seek access to their data for multiple clinical trials. As a result, much of the data captured often goes unused.

Kish pointed out that this inefficient process limits the amount of big data analytics that researchers can utilize on a broader scale, because it can’t be gathered cohesively on the individual. He said that many blockchain innovators in this space, therefore, see value around the creation of a unified data resource for medical research—a cache of data that could be worth literally trillions of dollars, all guided by individual consumers.

A final issue involves the initial recruitment of patients, which Kish said is one of the most costly parts of clinical research, at a cost of tens or even hundreds of thousands of dollars per patient. Patients must sign many forms declaring that they’ve received information prior to treatment or clinical trial.“A secure, anonymous data sharing layer was the original idea behind YouBase.”

“A secure, anonymous data sharing layer was the original idea behind YouBase.”

The integration of blockchain applications into the realms of medical and life science, including pharmaceutical research, development, and clinical trials, could unlock the power of medical data.

To these points, YouBase delivers a value proposition that addresses a number of problems in the medical/biopharma research space. These include:

The inability of consumers to access and leverage their own personal data for a multitude of possible uses across applications in a secure and private manner.
The need for a larger number of information silos to create new marketplaces for open, decentralized consumer data.
The lack of enterprises for creating insights that serve “data consumers,” those whose livelihood depends on greater data access and insights for science, social/marketing, finance, insurance, and other industries.

Concluded Kish:

“There’s a wide variety of diseases that are rare diseases, likely many diseases that haven’t even been discovered yet that could benefit from a worldwide data network driven by blockchain. A secure, anonymous data-sharing layer was the original idea behind YouBase, for exactly that sort of reason. We thought, “What if people with similar conditions could come together to collaborate and find solutions across the world?” That was an original promise behind the web, and so will it be with the emerging “web of data” that blockchains provide.” (7)

The YouBase Solution

Blockchain technology continues to garner increased attention as a shared, immutable ledger of peer-to-peer transactions, be they patient-to-doctor, patient-to-research lab, or doctor-to-pharmacist, all with a patient’s permission. It relies on established cryptographic techniques allowing each stakeholder in a network to interact (e.g., to store, exchange, and view information), without pre-existing trust between the parties. No third-party intermediary such as a hospital, an insurance provider, or a pharmaceutical company owns and manages the ledger. Rather, peers broadcast, validate, and record transactions across a distributed network of participants.

Early results suggest that the integration of blockchain applications into the realms of medical and life science, including pharmaceutical research, development, and clinical trials, could unlock the power of medical data. Blockchain’s business case may prove significant in terms of enhanced data integrity, security, clinical process efficiency, decentralization, disintermediation of trust, and reduced medical research costs.

Establishing processes where patients can share their data easily and anonymously for relevant medical and pharmaceutical studies has now emerged as a critical goal not only to further the cause of medical research but also to improve the efficacy and expense associated with clinical trials. Here blockchain’s well-documented qualities for the confidential and secure exchange of data offers immense promise.

YouBase is at the forefront of efforts around Health IT and precision medicine by way of an individual-centric health data exchange. Using an example tied to the biopharma industry, Kish had this to say:

“The pharmaceutical world ultimately wants what could be deemed “real-world evidence” of how drugs affect people in their lives. The only way to get that kind of information is to give people the keys to controlling it and sharing it. At YouBase we’ve found a very receptive audience to information being procured in this manner. In the end, I believe that most entities will come around to the idea that if they have something of value, it only becomes more useful if they can leverage it outside their organization. (8)

Josh Robinson, Kish’s business partner and fellow co-founder at YouBase adds:

Blockchain’s true gift is that it allows this data to be coordinated in a decentralized way between different entities. So the whole concept is predicated on individual ownership and control of their own data. In addition, there are also going to be a number of different entities that will maintain their data for them. So by using the blockchain, we’re hoping to be able to coordinate those various custodians while still having the ownership be with the individual as opposed to any one organization. (9)

When trying to identify people with a particular gene for a suitable study, the clinical research organization could contact that person directly via the person’s YouBase digital wallet.

“Big pharma has the most to gain from a unified set of health data resources and is the most willing to pay for it.”

These efforts underscore the value of blockchain in collecting digital signatures, timestamping, and immutability, without compromising anonymity and privacy, unless the consumer dictates such. Consider a patient’s participation in a clinical trial. As a potential participant, an individual might want to let a group of scientists know about a particular gene or biomarker without revealing any other personal information. They could release that datum, perhaps with the names of the lab and the person who validated the datum. Patients could release this datum to a clinical research organization (CRO). When trying to identify people with that gene for a suitable study, the CRO could contact that person via the YouBase digital wallet. By making greater amounts of data anonymous, yet verifiable, YouBase believes it can increase the pool of quality participants while reducing both the costs and the time associated with clinical trial recruitment.

Kish said that YouBase plans to constantly review adoption metrics tied to how many people sign up to access and share their health information through the YouBase application.

“We want to make sure we offer incentives that are attractive. We’ll also be looking at the number of developers who start building applications on top of YouBase, who elect to give their users ownership of their data and de-risking user data. Signups and signing deals in both these areas will be of high interest.” (10)

Kish said that adoption and business development will lead YouBase to sustainability. “Our goal is to partner to get to scale. We can get to a self-sustaining model within a year or two if we get some of the levels of adoption we believe is possible with the successful implementation of some of the projects we are proposing.”

With respect to opportunities for transformation as well as the scaling for other areas via the blockchain, Kish again commented:

“In my opinion, big pharma has the most to gain from a unified set of health data resources and is the most willing to pay for it. I think we’ll actually see pharma supporting a lot of interoperability and data exchange going forward because they might have the most immediate value to gain.” (11)

YouBase could also incorporate biometric identification so that a health event could trigger access to critical health data. Said Brennan Bennett, editor-in-chief of Blockchain Healthcare Review:

“There is a strong blockchain genomic data scene emerging that facilitates everything from storage of DNA using bitcoin to controlling your digital identity with a genome sequence stored on a blockchain just in case you ever lose your passport.” (12)

Broad Adoption of Health Data Solutions

Opportunities to improve research and treatment

The work of YouBase is tied to a larger movement around increased access to health data. New clinical research and medical delivery models became possible through the analysis of health data from tens of thousands of donors. This clinical information assists scientists in their efforts to create better treatments for specific groups, better assess the role of health information in terms of diseases and immunities, and create higher levels of scientific progress. Patients can be diagnosed with greater precision so they can receive a tailored treatment plan that boosts care effectiveness. Greater possibilities around personalized medicine become available when we know a person’s genomic makeup and can tailor treatment protocols. This reduces costs, increases care delivery efficiencies, and allows for a highly targeted treatment regime that provides the best care possible. Although these emerging developments provide potential advancements in care delivery, they result in ethical and societal issues that we need to watch closely. Privacy is the biggest complication; there is no clear legal owner of the genomic data. As in the case of the HeLa cells of Henrietta Lacks, clinical data and medical findings are largely unpatentable, lacking authorship or creators, and thus cannot be copyrighted.

Blockchains offer unprecedented levels of privacy, security, and ownership to this endeavor.

Via the blockchain, data becomes virtually unhackable while offering a time-limited access key to a doctor or others with whom a patient or research subject wants or needs to share the data. Since individuals do not legally “own” their genomic information, how can healthcare providers and regulators ensure the security and privacy of our personal health and genomic data? Through the innovative approach of YouBase, blockchain can safely hide these forms of data from prying eyes while allowing scientists to gather critical information about large populations—utilizing that data only with the contributor’s permission.

Via the blockchain, data becomes virtually unhackable while offering a time-limited access key to a doctor or others with whom a patient or research subject wants or needs to share the data. The misuse of these data can also be tracked because the data have unique signatures known as hashes. For scientists, having access to the metadata—the data about the data, such as age, ethnicity, and gender—as well as the ability to search for potential subjects whose data might be useful for a study is invaluable. This search reveals nothing specific or personal about the donor. Rather, the access request is sent to the donor, who then can choose whether to grant access and even negotiate terms of usage, including payment for its use.

Here blockchain’s functionality proves valuable in managing transactions. Research institutes and companies with a huge cache of health and/or biopharma data can purchase licenses to store their data without concern about ethics, which is already tied to the product and its transactions, allowing them to focus instead on research and science. Blockchains offer unprecedented levels of privacy, security, and ownership to this endeavor. According to Kish, the first custodial node pilot is set up with MedChart in Toronto as part of a pilot. YouBase libraries are also installed at Self Care Catalysts in Toronto to facilitate individual-centric, key-based data exchange. Said Kish:

“We are working with data aggregators and data consumers with individuals at the center. We’re learning a lot about how to create value for users by combining data in ways that were impossible to do before, across previously unconnected applications. We’re learning about the power of key-based data exchange as a benefit to end users and easier for developers. The value is in the data exchange that’s fast, simple, flexible, and controlled by users.” (13)

Blockchain’s impact in the medical research and big pharma space is very much predicated on future collaboration among networks as well as the adoption of key applications by current or new market players.

“These incentives will be facilitated through the use of tokens on the YouBase network, allowing certain health activities or transactions to be compensated. The specifics of how the incentives work will be in part up to the participants.”

What Next?

Implementation Challenges

Despite the promising developments outlined in this paper, blockchain technology amid its rapid evolution remains in an early stage of infancy. Its impact in the medical research and big pharma space is predicated on future collaboration among networks and the adoption of key applications by current or new market players.
The technology is still a ways off in terms of being able to generate significant traction as blockchains struggle to scale significantly.
There are bureaucratic bottlenecks and institutional resistance to change given the high stakes and potential financial returns tied to health data.

When asked about these obstacles moving forward, Kish had this to say:

“There are challenges that blockchain and individual-centric data stores simply can’t solve, like interoperability. But we can change the locus of how to solve them from institution-centric to individual-centric. So, while we can help keep a longitudinal resource of data around each individual, how it is extracted and used by another research group is something we’re not there with.” (14)

He continues by saying that one of the big issues that he is interested in exploring is how medical data transactions and the sharing of information can literally become economic transactions through the blockchain:

“My vision since 2010 or 2011 has been in forging a kind of health data economy where the transfer of data is associated with some sort of benefits to the end user. In other words, these uses of their data would be ultimately incentivized with benefits being applied back to the person that owns that data, the patients, and individuals themselves.” (15)

Continued Kish:

“These incentives will be facilitated through the use of tokens on the YouBase network, allowing certain health activities or transactions to be compensated. The specifics of how the incentives work will be in part up to the participants. YouBase simply will provide the foundation on which to build them.” (16)

Key Takeaways

Blockchain can unlock the enormous value of data troves, allowing patients to provide access to their data for research purposes and receive compensation for it.

In conclusion, this case study underscores how blockchain could foster a new normal for managing, valuing, and using health data. The significance of this is immense given the groundbreaking clinical discoveries that medical and big pharma clinical research promise to deliver.

There are a number of key takeaways tied to YouBase’s advancements:

A distributed health data model like that in development at YouBase gives consumers control over how their personal data is distributed and to whom.
Allowing individual consumers to maintain control over who is able to access their data is pivotal to a more secure, fairer health information ecosystem.
Blockchain’s immutable qualities allow research data to become less susceptible to alterations and manipulations that skew clinical study outcomes.
Blockchain can unlock the enormous value of data troves, allowing patients to provide access to their data for research purposes and receive compensation for it.
The YouBase model allows identity and data to remain separate, allowing users to share their data and personally identifiable information without having to “de-identify” it for clinical research purposes.
Traceability and accountability of health data becomes much easier when you can tie data to digital signatures and timestamps to show who did what, and when.
Blockchain’s impact on medical research will without a doubt be historic and will have the most immediate and long-lasting trickle-down effect for the healthcare industry.
Major advancements will occur through payers and big providers testing out business-to-consumer applications, ultimately allowing all parties to save real money when consumers purchase treatments or engage in a type of therapy through medical research.

An Update: YouBase (2023)

Based on cursory research, YouBase remains a standalone startup company, but links for YouBase redirect to https://www.crtx.app/ – suggesting that YouBase has been incorporated into the Cortext Network – “a scalable, provable, user-centric network for publishing Web3 content.”

Leonard Kish remains listed as the CEO of YouBase, but is also listed on his LinkedIn profile as the Chief Technology Officer at https://bldx.io/: “The first Digital Identities for buildings, archiving sustainability and data history within a smart digital twin.”

YouBasxe Co-founder Josh Robinson is now listed as freelance for YouBase and is also listed on his LinkedIn profile as the Founder & Chief Architect at Butterfly Protocol.

Over the course of 2018, YouBase announced these interesting partnerships – which are still active today:

YouBase and Toda-Algorand Announce Collaboration: YouBase, Inc. (http://www.youbase.io) announced…they are teaming up with Toda-Algorand, Inc. to provide people with access and control of their life data. YouBase offers blockchain-independent tools for structured data, making it easier to build blockchain-compatible apps that support a user’s personal control and privacy. Toda-Algorand is providing a layer-zero technology enabling blockchains to scale at a very low cost to help bring the promises of the technology to fruition for all.

Toda.Network Corp and YouBase Inc. form Joint-Venture to Deliver on Blockchain’s Promise of Digital Sovereign Identity Management: Toda.Network Corp. the organization created to foster the growing ecosystem of blockchain companies built on the TODA protocol (“On TODA” or “OT”), is announcing a joint venture with YouBase, a platform enabling the use of individual-centric, private and personal life data across applications. The TODA protocol enables blockchain projects to deliver on security, efficiency, confidentiality, scalability and interoperability, the 5 fundamentals that define the raison d’être of blockchain technology. Toda.Network supports an ecosystem of companies that are built on the TODA Protocol. The TODA protocol is a network protocol, referred to as a blockchain “layer-zero” that works as a foundational layer and serves as an evolution of TCP/IP. In a network topology, TODA would be layer 3 and 4 combined, the same as TCP/IP. This foundation enables blockchains and applications using blockchains to scale to billions of users and handle millions of on-chain transactions per second at near-zero cost.

About YouBase, Inc.
–Headquartered in Englewood, CO, YouBase enables a world where people have complete control over their life data. By creating tools that are easy to use & integrate, YouBase is paving the way for a future-proof approach to the storage & management of data around individuals. YouBase continues to build a world-class team, including executives, investors, and advisors who are leaders across digital health, technology, and blockchain. To learn more, visit https://www.youbase.io/.

About Toda-Algorand, Inc.
–Headquartered in San Francisco, CA, Toda-Algorand, Inc. is a joint venture between Toda Corp. and Algorand, Inc. created to build a new foundation for Blockchains. At the core of Toda-Algorand is the Toda Protocol at layer zero (just like TCP/IP for the internet), or Toda-T, an ITU-T standard. Algorand ledger works as a preferred efficient ledger Layer 1. Toda Corp. is led by Toufi Saliba (CEO of Toda-Algorand and serial tech-founder whose last startup became an Intel company, and prior to that built startups and IP resulting in acquisitions by Google, HP and Opentext) Dann Toliver (NASA, F500), Todd Gebhart (former co-president McAfee, Vice Chairman Intel Security), and Lila Tretikov (former CEO Wikimedia, Bank of America, Forbes 100 Most Powerful Women). Algorand was authored by Toda-Algorand partner Silvio Micali, a Turing Award Winner and professor at MIT.

About YouBase.OT
YouBase.OT is a joint venture formed by YouBase and Toda.Network. YouBase creates richer digital experiences by giving individuals sovereignty over their life data. YouBase provides a framework for portable, persistent and private life data across applications on Bitcoin bip32. For developers to build on this data, YouBase makes distributed application development quicker and easier by reducing custom development and allowing developers to use the tools they know and integrate with cryptocurrencies, blockchains, and distributed data on a seamless data architecture. Learn More: https://www.toda.network/youbase-ot

About Toda.Network
Toda.Network is an organization that supports an ecosystem of companies that are built On TODA (OT). The TODA protocol is recognized as the next evolution of TCP/IP, effectively enabling value management and transfer over the communication layer and below the operating system. TODA enables businesses and blockchains to scale to billions of users and handle millions of on-chain transactions per second at a near-zero cost while benefiting from security, efficiency, confidentiality, and scalability by design. It also enables interoperability via a P2P atomic swap exchange between any two blockchains without depending on third parties. Anyone can build on the TODA Protocol – for free. However, leveraging Toda.Network’s “know-how” is available only to businesses with significant potential by either licensing or creating a joint venture with Toda.Network. Learn more: Toda.Network.

A shout-out and a thank you to the Ontario, Canada-based Blockchain Research Institute (BRI) and the authors of this research. BRI allows for the distribution of a high percentage of its blockchain research and really interesting case studies with real-world applications via a Creative Commons license.

About the Author: Michael Scott is an independent writer and journalist focusing exclusively on blockchain technology and cryptocurrencies. Prior to this work, he was on healthcare leadership teams with three hospitals and a community health center over a ten-year period. He also served a two-year stint on the institutional review board for the University of California Davis Medical Center. Michael has a Master of Public Administration in Health Services Administration from the University of San Francisco.

The Blockchain Research Institute is an independent, global think tank founded by Don and Alex Tapscott and funded by an international membership of corporations and government agencies. Its multimillion-dollar research program consists of nearly 100 projects on the strategic impact of distributed applications and blockchain technology on business and society. Each white paper is written by a subject matter expert and designed to prepare private- and public-sector leaders in their roles as catalysts of change, ushering in this next generation of networked technologies.

This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Source: Michael Scott, “Medical and Biopharma Research: Managing Genetic and Health Data on the Blockchain,” foreword by Don Tapscott, Blockchain Research Institute, 11 Dec. 2017.

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