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Capitalising on health data at every level
Today, commodities and financial products are traded in an open and free market reaching around the world. Futures for oil, corn, precious metals and even carbon dioxide are traded by banks and individuals in all corners of the globe. With blockchain, the creation of a comparably open and transparent health data network is possible; and the creation of such a market offers the potential for both individuals and health systems to monetise the data they accrue (figure 3). Such health data, combining data from medical records, wearable devices, pharmacies and, increasingly, genetic and genomic data, stand to tell us more about human health than any major trial or series could. Efficacy of competing treatment algorithms for patients with cancer, and their likelihood of success based on factors not currently woven into treatment plans; implications of partial medication compliance on long-term health outcomes; and the optimised management of chronic diseases across wildly different populations, all stand to be elucidated by such data. Presumably, the value of such data will ebb and flow over time, as more is learnt and better medications and treatment plans are optimised for various diseases and populations. Data for patients with Alzheimer’s today, for instance, are far more valuable than it would have been 50 years ago, while data for thyroid disorders are far less valuable than it might have been in the 1920s. An open market would reflect the current value of health data, based on burden of disease and ongoing research. Moreover, blockchain creates the opportunity for medical information to remain the property of the patient, thus allowing an individual to opt in or out of given research studies. This can be accomplished by using the above reference biometric data as a kind of private key, requiring researchers to gain approval and ascent from the patients before using their anonymised health data.
Moving health data from its current, protected status onto open, anonymised public ledgers will require a reorientation of thought and law in many countries. In the USA, for instance, the Health Information Portability and Accountability Act poses a significant hurdle. Notably, the use of mathematically derived pseudonyms is likely to run afoul of the regulation.19 It will be imperative for policymakers in these countries to create space for information to move legally from its current storage on fragmented, centralised, identifiable health records which continue to provide rich targets for hacking and extortion, onto encrypted blockchains.20
For LMIC governments, this type of data ownership, control and marketisation of health information could incentivise or promote investments in health system strengthening in exchange for access to national data. Industry could expand beyond their limited ‘corporate social responsibility’ budgets for LMIC investments and make real market-based decisions with the knowledge that smart contracts and predetermined data flows would correspond to their capital investments in specific health sectors or even more global health system investments at a national scale. Furthermore, as LMICs capitalise on their national health data for research and innovation, it is likely to drive down the value of data in HICs and create a more equitable global market for health data. These market forces will drive down the costs of wearable devices, cellphones and other means for data collection, health monitoring and evaluation as research and innovation turns to LMICs, subsequently expanding LMIC access to monitoring and evaluation methods and giving them new focal points to target cost- effective national and local health interventions.