Recently, while attending an EU policy perspective meeting on the topic of reimbursement in the field of personalised medicine, our group of innovators, doctors, health insurers, policy makers and researchers discussed and identified some of the most urgent needs in healthcare.
Among the topics at the top of the list were the need for:
However, to implement increased and improved data collection is not a trivial task. Our ability to quickly and inexpensively generate and analyse massive amounts of medical and genetic data is far outstripping the security measures used to keep this sensitive personal data safe and private.
Even more important is the question of how this data will be managed, and by whom. Insurers, pharmaceutical companies, genome initiatives, and consumer genetic testing companies have access to vast amounts of data. Ideally, this responsibility remains with the data owner, e.g. the patient whose data it is. But right now, patients and consumers have almost no control over how these data are used or who can access them.
It seems that few people are giving a second thought to the privacy issues surrounding the storage of their most personal data, largely driven by the lack of available information about data handling from the big players in the space. Until now, genetic testing companies have been routinely selling data to third parties, but this may change with the General Data Protection Regulation (GDPR) (effective from 25 May 2018), set to force companies to become strictly compliant with the new data handling laws or face the possibility of hefty fines.
Currently, data are typically pseudonymised before being passed on to a third party. However, in some cases it may not be difficult to link identifying information to gene data, and it has been proven that certain types of pseudonymisation and encryption can be broken, which means data breaches are being delayed, but not entirely eliminated as a possibility. In the hands of cybercriminals, access to identifiable genetic information could lead to genetic discrimination or worse – not just for the donor, but for their family as well. Imagine the potential damage were a hacker to send data that had been tampered with to a medical device such as an insulin pump or pacemaker.
So, if we are to realise the vast potential of healthcare data and be able to openly share it to improve medicine, we must solve the current predicament in data security and access. Luckily, there is a technology that can make this possible: blockchain.
Why blockchain? Blockchains offer superior security and privacy compared to today’s prevailing, centralised solutions that leave data vulnerable. When storing healthcare data in a blockchain (or off-chain with the help of distributed ledgers), advanced cryptography is used for encrypting the contents of a message or transaction, so only intended users can open and read its contents.
Blockchain technology creates a public ledger of transactions (data transfers) that are linked chronologically and cannot be deleted or edited. Each record is time-stamped and verifiable. It ensures data integrity by attributing healthcare data to an irrefutable identity, validating all copies of the ledger, and providing tamper-proof security. Practically, to break into one data block, a cybercriminal would have to tamper independently with all the blocks that link to it – a daunting task.
In addition, blockchain provides decentralisation, meaning that there is no single access point for hackers and hence no opportunity to mass-download data. Another advantage is disintermediation, the reduction of intermediaries (such as wholesalers and middlemen) between producers, healthcare providers, and patients, improving efficiency in data transfers. By helping keep identities private people paradoxically become more eager to share their valuable data, because they know that they can retain that control.
Blockchain platforms also do not care about country borders, significantly increasing interoperability and opening up a huge worldwide community for companies that work with this technology. Healthcare providers can potentially operate everywhere, serving underserved markets such as the transitional countries in Africa, South America or the Middle East.
Blockchain, as a permanent ledger, provides everybody with structured, time-stamped data, which is especially important in highly regulated environments such as the medical sector. Blockchain protocols work with smart contracts, so real-time transactions occur automatically via predefined agreements, which makes operations in the healthcare ecosystems fast and affordable. Last, but not least, blockchain technology, in the form of cryptocurrency, can digitise assets, making them securely available globally, and can be used to incentivise individuals for providing quality data.
Creating a system in which people are in control of their genetic and health data, and in which that data can be transferred safely and easily can help usher in an era of open, collaborative, and data-driven science that paves the way for improved pharmaceutical and institutional research, driving true precision medicine and preventive healthcare.
To accomplish this, virtually all healthcare stakeholders will need to consider reengineering their business models. However, this is a perfect time to do it, as the industry is surrounded by innovation and emerging technology, such as advanced analytics, artificial intelligence, Internet-of-Things-enabled devices and more.
Nevertheless, there are challenges to overcome, such as institutional inertia and companies being comfortable with the status quo. Many doctors and healthcare providers will be reluctant to give up control of their hierarchical systems and move to democratised healthcare structures.
Companies that act quickly to implement and develop blockchain solutions will soon be able to take market share of user base and revenues from those who are too late jumping on the train.
Similarly, pharmaceutical companies that opt not to invest in blockchain will face problems. While they remain highly profitable using their old systems, big pharma companies have no incentives to innovate. Entrepreneurs, investors, and innovators should use this institutional resistance to their own benefit, working on introducing transparency, empowering patients, and improving healthcare provider responsiveness.
In summary, with the emergence of blockchain technology, healthcare has been brought to the cusp of a major paradigm shift. Blockchain can be indispensable in building a global healthcare ecosystem that optimally connects patients, governments, clinicians, and researchers, and lowers costs for healthcare systems. Blockchain will improve such key areas as artificial intelligence-based diagnostics, preventive healthcare, identification of counterfeit drugs, big data analytics, data security, data sharing, health information exchange, drug R&D, and new business models – but key stakeholders need to embrace this technology and look for ways to implement it in their solutions.
Dr Axel Schumacher is the CEO and co-founder of blockchain-enabled genomic data hub Shivom. He has more than 20 years’ experience in the genetics field.
Shivom’s platform aims to be the largest genomic and healthcare data hub on the planet, allowing the world’s population to have genomes sequenced and securely stored with the help of blockchain technology.