Shivom: a precision medicine data secure-sharing and analysis ecosystem

Shivom: a precision medicine data secure-sharing and analysis ecosystem

Chief scientific officer Dr Axel Schumacher introduces Shivom as an innovative solution to transform the precision medicine and healthcare services landscape.

AT a time when discussions about data privacy and security are more important than ever, there is one particular type of data that is raising concerns: our DNA. Our genetic information embedded in our chromosomes is what makes each individual unique. It possesses information about our ancestors, our health status, disease predispositions, our environment and our future. Everything that defines us as individual lies in the spirals of our DNA.

Imagine the life-saving treatments that we could create by gaining access to the information stored in our genome. Understanding what makes us what we are can facilitate healthy ageing by preventing diseases from occurring in the first place. We could even remove certain diseases by literally cutting them out of our DNA. Indeed, scientists have revolutionised our ability to do so with the discovery and refinement of a molecular tool called CRISPR that allows us to edit sections of DNA. This tool can excise specific parts of genetic information and replace them with new segments, eliminating diseases or giving people potentially whole new traits. The ability to edit cells inside our bodies will open up the entire realm of human diseases to treatment and potentially even eradication.

Ethical obstacles

Hacking the human genome seems very exciting. But this is where ethical concerns appear:
How far can we go in exploring and manipulating our genetic code?

  • What happens if people can gain access to your private genetic information?
  • Who has a right to access and use that information and how can we enforce
    those rights?
  • What control should we be granted over our DNA and the data that it can provide?
  • Can we actively participate in research for supporting medical breakthroughs by sharing our genetic code anonymously?
  • Do we own our genome and, therefore, can we monetise it?

The answers to these questions are not trivial – partly because DNA exists both as a physical object and as digital information that can be easily copied.

Is blockchain the solution?

Various start-ups are currently trying to bring answers to these burning questions. Some with biomolecular solutions, some with physics and others with digital technologies. Among these digital tools that promise to revolutionise healthcare, blockchain is starting to gain a solid reputation. Blockchain is a shared database system based on a clever combination of cryptography and distributed processing, through which digital records can be stored, viewed and updated by multiple users through a decentralised network on the internet.
Properly implemented, a blockchain and its associated smart contracts can together act as a virtual, autonomous third party, self-executing transactions in response to events that can then be stored by a tamper-proof ledger.

How is the technology going to address the challenges of genomics, you might ask?

Shivom: a blockchain-based revolution

Shivom is a blockchain-based genomics start-up and marketplace that creates an entire ecosystem for next-generation genomic and healthcare services. The strength of this venture is the central place it gives individuals, by empowering them to entirely control the access to their genomic data in a fine-grained manner. This new ecosystem has the potential to revolutionise how medicine happens.

In the next few years, hundreds of millions of individuals will undergo whole-genome sequencing, making genetics far more informative. What happens when whole-genome sequencing becomes eminently affordable and widely available? We estimate that in the not-too-distant future, it will be normal that the genomes of almost every human being will be sequenced. Already, more than 20 million people have sent their DNA for testing, but storing the data, ensuring ownership of it and determining who should have access to it are many of the areas that Shivom has addressed in its alpha product.

Shivom’s first iteration of the platform was released in autumn 2018, allowing individuals to upload and store their DNA data securely; more importantly, they ‘own’ their data so that they can choose to share it, analyse it or even monetise it in the future, getting their fair share of the $70bn (~€61bn) pharmaceutical companies are paying annually for research & development trials.1

Towards personalised medicine

Personalised medicine is expected to transform the entire pharmaceutical value chain over the next five years, and there is an increasing appetite from pharmaceutical companies to have access to genomic data that they can use to develop drugs tailored to a person’s genetic profile.

The pharma giant GlaxoSmithKline (GSK) recently paid $300m to get access to a database of genetic information of roughly 3.5 million people who have agreed to share their non-identifiable data for the purposes of genetics research.2 GSK scientists hope that with having access to this kind of data, they can more easily and quickly pinpoint new targets for Parkinson’s disease and prioritise efforts based on the strength of the biological hypothesis and possibility of finding a treatment.

The next step in the development of a better, more secure, fair and global genetic database for the purpose of personalised healthcare is the Shivom ecosystem. Individuals can store their data on the Shivom platform securely, by uploading their DNA data file provided from a home testing kit. There is no cost to upload the data and even Shivom can’t access it; the data donor is the sole owner and manager of their data. User identities are masked and data is encrypted at all times.

To share aspects of their data, and to control who has the ability to search or contact them, individual users can simply adjust their permission settings using a so-called ‘dynamic consent platform’, a next-level access control mechanism for healthcare data. The more data there is, e.g. from electronic medical records, genomic data, streamed from wearables or other personal health records, the more need there is for data privacy and access control.

Individuals on the Shivom platform may want and need the ability to specify with high precision which users may access their health information, which parts of their records researchers may access, and what kinds of operations the data requesters may perform (read the data, analyse it, download it etc.).

Pharmaceutical companies can then, if the user agrees to it, search DNA files and drill down into more granular data such as patient condition, genetic variations, therapeutic area, number of patients in each dataset, and so on. In the future, users who do choose to share their genome data with researchers and pharmaceutical companies will be able to grant them access in anonymised form for a certain period and receive a payment in exchange.

This functionality will be available to users via the Shivom web portal, or via iOS and Android mobile apps.

What is the meaning behind the name Shivom?

Shivom is partly derived from the Indian terms ‘shiv’ and ‘om’, both meaning destruction and (essence of) life. The suffix ‘om’ (or ‘-ome’) is also used to address the objects of scientific study of fields such as the genome, epigenome, transcriptome, proteome or metabolome respectively. An ‘Om’ aims at the collective characterisation and quantification of pools of biological molecules that translate into the structure, function and dynamics of an organism or organisms. So, we chose Shivom as our name as it relates to our vision for the distant future of mankind, helping to destroy every disease and foster new and healthier life.

What is Shivom’s business model?

Shivom is the next evolutionary step in the fields of genomics, artificial intelligence and blockchain, bringing all those technologies together. For the first time ever, a sophisticated healthcare ecosystem will offer an open web marketplace, in which other providers can add their healthcare or fitness-related apps and services, alongside genomic data analytics and personalised medicine.

Our platform builds the core of this global business that will serve not only enterprise customers (e.g. pharma and biotech companies, healthcare providers, diagnostic labs, and various health-related organisations) but also every human who wants to age healthier. In theory, we have a customer base of 7.6 billion people.

Leveraging our OMX token technology, our healthcare marketplace creates opportunities for healthcare providers, app developers, genetic counsellors, researchers, start-ups, diagnostic service providers, and various sellers anywhere to reach clients around the world.

In the past, many companies would limit their customer base to their home country due to the practical challenges of offering products and services internationally. It is planned that even small and niche sellers or interested individuals will be able tap into our global customer base.

Most start-ups often have only domain-specific experience in some areas, lacking the well-rounded nature necessary to build a sustainable company. While they may have a business perspective in some niche areas, Shivom has a comprehensive business model, leveraging game theory and network effects to establish a fully integrated healthcare service system with long-term sustainability and the possibility for users to share and monetise their data.

The Shivom precision medicine marketplace will be developed to have a vast selection (we aim to build the ‘world’s largest healthcare ecosystem’), with unmatched quality and competitive offerings driving customer experience. I’m talking about customer obsession, eagerness to conquer new business and innovation frontiers, thinking long-term in revolutionising healthcare, and taking professional pride in scientific excellence and helping people to be empowered to take healthcare into their own hands.

Providing products and healthcare services at a next-level quality and lower prices are some of our key objectives with a low-cost structure mainly driven by the fact that we save on the costs of brick-and-mortar stores and leveraging a network of third-party service providers.

We will combine state-of-the-art customer centricity with dynamic pricing (with special offers for our community) to create a virtuous cycle of optimised pricing algorithms and cool new offerings that can form a competitive advantage and increase the network that reaches far beyond ‘good offers’; in the end, the health of our users is the target – and who doesn’t want to be healthy?

We aim to leverage collaborations and partnerships to make this happen in an open and transparent way, truly utilising the complete set of benefits that blockchain technology has to offer. While this is a grand vision, it’s not out of reach, and we have put together not only a next-level business strategy but also a world-class team that’s capable of executing this on a global scale. Shivom’s team already has experience in building highly scalable businesses, as well as precision medicine and bioinformatics platforms. In fact, I’m continually amazed by the passion, creativity, intelligence and professionality on display. Our team accomplished more than what most people thought possible during the last year.

What types of services, besides storing genetic data, do you provide?

The types of products and services that we can offer on our platform are almost limitless.

Everything starts with having access to your genomic information, and many services can be used to make this information actionable, providing new paths for people to get or stay healthy. One of our first product lines is genetic reports that help patients and healthy individuals to better understand their body and the way that their lifestyle affects their health. Because medical genomics is a difficult science, we also want to offer genetic counselling to patients and doctors; people should not be left alone with handling potentially critical healthcare decisions. Once we have the information on how diseases develop, we can offer individuals targeted services and products that keep them healthy.

On the enterprise side, Shivom empowers organisations with the ability to search genomic data, recruit patient groups and controls, analyse data with newest bioinformatics pipelines and AI algorithms, and promote their solutions within our online marketplace.

These features look to recruit patients and lower R&D costs whilst uncovering novel insights from the latest sequencing technology. And we are only at the beginning; once we scale, the pace of innovation and new product developments will continue to accelerate.

You have signed various partnerships with companies such as SingularityNET
and Lifebit. What should we expect from these collaborations?

Shivom continuously seeks to enhance the uniformity and credibility of the blockchain system and to combine state-of-the art technology to build something truly new. Through our partnerships with companies like SingularityNET and Lifebit, we recognise the enormous potential of blockchain to revolutionise healthcare, and this partnership (as well as our partnerships in general) aims to develop best practices and standards that promote consistency and uniformity throughout the blockchain, AI and precision medicine communities.

Millions of people are now having their DNA sequenced ever year as the cost continues to come down. But analysing the data is complex and time-consuming work that requires highly specialised experts – which are in short supply.

Through Shivom’s partnership with Lifebit, the platform will introduce a cloud-based cognitive system to its blockchain genomics platform, which uses machine learning to extract insights from DNA data. The technology, created by London-based Lifebit, will provide Shivom customers with the next level in DNA analysis of personal genomes for wellness purposes. The solution, called Deploit, constantly learns from every interaction, enabling ever-improving insights and analysis.

With SingularityNET we share many common interests. Because the SingularityNET AI team is involved with a number of research projects –including those that look at the genomics of longevity in an effort to support medical research aimed at maximising the healthy human lifespan – connecting our data sources and platform capabilities will bring many synergies.

Once the integration is complete, AI agents on SingularityNET that require genomic or other biological data to complete tasks will be able to request datasets from Shivom. In return, if a Shivom customer requests that AI analytics are to be performed on the medical data they have uploaded, the Shivom network will be able to request the technology from SingularityNET. We expect to accelerate these services through our combined networks, providing customers, researchers and medical professionals with a clear and enhanced understanding of personalised health analytics.

The idea behind this future global collaborative movement is that a whole pharmaceutical ecosystem can be transposed on top of a blockchain network, paving the way to trusted and open R&D processes and transactions between parties, powered by the collective self-interest of a global community of independent investors.

Shivom has a big focus on securing genetic data with blockchain technology. Are you looking at collecting other type of wellbeing or health data in the long term?

Yes, long term, together with our partners, we aim to offer services that are based on not only genomic data but also other ‘omics’ information and even sociodemographic data.

Genomics is an entry point for looking at the other ‘omics’ sciences. When combining genomic data with other molecular data types, such as epigenome, transcriptomes, microbiomes and clinical information, the resulting uniquely rich dataset enables integrative analyses to be carried out at unprecedented depth and scale and facilitates new insights into molecular disease processes. Integrating data from different technologies is a rare case where 1 + 1 equals more than 2; the more data is combined, the more valuable the scientific insight.

Linkage of multiple datasets at the individual person level is needed for big data to become truly transformative. Combining experimental results from multiple ‘omics’ platforms is an emerging approach which aims to help identify latent biological relationships that may become evident only through holistic analyses integrating measurements across multiple biochemical domains.

We will not stop at only collecting the data. A core focus of Shivom’s long-term plan is the establishment of a highly scalable ‘open-source’ research and drug development organisation, for the development of more effective, less costly and safer therapeutics and precision medicines (especially for low-income populations).

Shivom will primarily concentrate on age-related diseases (dementia), diabetes (overweight), and cardiovascular diseases. With the availability of comprehensive ‘omic’ assessment of an individual, including one’s genome, microbiome, epigenome, metabolome, proteome or autoantibodies, it has become clear that each of us has truly one-of-a-kind biological content. Collecting this individual health data provides Shivom with a remarkable and unprecedented opportunity to improve medical treatment and develop preventive strategies to preserve health, opening completely new business prospects.

How does Shivom communicate with patients, and what are their main concerns, if any, when it comes to sharing their genetic data?

We try to encourage participants to share their data for research purposes. Global genomic data and knowledge sharing reflects a call for a new social contract based on a principle of solidarity and a duty to act for the common good. We communicate directly with our patients that are enrolled in trials, via their doctors or on our platform. Shivom’s platform notifies our patients when an enterprise has requested to view, search or contact the patient/DNA data file, keeping in mind that no direct access (i.e. the option to download) to genomic data will be granted, just the option to analyse parts of the data. It’s up to each individual to decide whether they would like to proceed and allow the enterprise to go further or revoke access. To do this, we developed a fine-grained ‘dynamic consent’ where patients and healthy users can exactly specify what should happen with their data. The main concern our patients have when it comes to sharing genetic data is being able to understand who has access, how they can revoke access and what rewards/contributions they will receive for sharing.

What for you is the main obstacle to implement blockchain technology on a large scale in the healthcare industry?

Shivom’s platform and technology solutions will help to unlock siloed datasets globally and provide enterprises with enhanced data provenance and opportunities to securely source and analyse datasets around the world. However, implementing change such as introducing blockchain technology to our healthcare systems may be technically feasible, but there are various important roadblocks to overcome.

One major issue is institutional resistance – comfort with the status quo is extraordinarily powerful. Many corporate departments and healthcare providers are not willing to give up control of their systems, because it means a loss of power from central authorities to non-hierarchical and peer-to-peer structures. Additionally, most organisations are not prepared for sudden paradigm shifts and are more familiar with incremental or evolutionary change, which is slow and proceeds only in small steps. For many stakeholders, the resistance to change might be elevated if it is not clear how much value blockchain technology adds – there are some centralised systems that seem to be performing well.

Further, not everyone is interested in adopting cheaper and more transparent systems, especially in environments where healthcare is traditionally primarily a business and not a service for the greater good. In those countries, the healthcare provider’s business model is not necessarily based on reducing the volume of medical services; they are, in the end, for-profit companies, and their goal is to maximise their revenue. Since every step of the patient journey contributes to the expenses, every step becomes a business opportunity and as such the money goes everywhere.

There’s no incentive for a health industry that is so profitable to innovate. Consumers have no choice but to buy in to essential services at incredibly high prices. One way to address that problem is introducing transparency and enabling pressure by those stakeholders, i.e., patients, insurances and government, who have to pay the bills. Blockchain technology is well suited to offer this transparency, thereby empowering patients and improving responsiveness, but developers still have to make sure that information is readily accessed, not only by blockchain experts.

As such, fundamental reforms will need to be engineered into the business models of virtually every healthcare stakeholder. If transparency is part of the system – and people demand transparency – pressure will grow on stakeholders to provide it.

What is an OMX token?

The OMX token is used to fuel the Shivom ecosystem and can be exchanged for goods and services on the platform even across borders. Basically, you can ‘tokenise’ everything within the Shivom ecosystem. A token is a symbol of a contract, and as such tokens are an easy way for organisations from around the world to reward patient participation or data sharing and to give patients the ability to acquire genome sequencing kits, genetic reports and applications within the global Shivom marketplace.

How do we utilise blockchain?

Shivom utilises blockchain and smart-contract technology to verify ownership of DNA data and authorise transactions between consumers, enterprises and research organisations.
Blockchain is a relatively new technology which has demonstrated an encrypted and decentralised architecture to authorise, trace ownership and protect privacy, which is not currently available with centralised technologies.

This is important to Shivom’s users, who will now have ownership and total control of their own DNA data, all the while being able to control who has access at any given time.

What are the next milestones in Shivom’s development?

Shivom will continue iterating on its products and fleshing out our core features on the platform – above all, our work is driven by a focus on data security and accessibility. In tandem, we’ll launch numerous upgrades to campaign management for enterprise users and enterprise search function (providing granular filters for organisations seeking out specific datasets, i.e. those from specific regions, associated with certain diseases or conditions, etc.).

For users that wish to share their data with researchers or institutes in the medical field (all whilst being remunerated for their participation), Shivom will be rolling out the ability to anonymously provide organisations with datasets within a set timeframe, leveraging blockchain-based payments directly into an integrated account accessible via Shivom’s web portal.

References

  1. https://endpts.com/top-pharma-biotech-research-development-budgets/
  2. https://www.clinicalomics.com/articles/23andme-wins-300m-investment-from-gsk-in-parkinson-s-disease-partnership/1803

Nate Raine
Director of Marketing
& Communications
Shivom
nate@shivom.io
https://shivom.io/

Please note, this article will appear in issue 8 of Health Europa Quarterly, which is available to read now.

LEAVE A REPLY

Please enter your comment!
Please enter your name here