Data Ownership Is Having Its Moment

Every healthcare stakeholder wins when personal data becomes personal property



Fear of change is a powerful force. Many believe that if something truly novel is created, something existing must die. It’s as if innovation is a zero-sum game.

Change can be disruptive and expensive, but there are some precious times when change – or rather evolution – can be purely constructive.

The marketplace for the data of individual healthcare consumers is broken. It’s unsustainable, unfriendly and everyone knows that sooner or later it must change. That change can come through lawsuits and legislation or by the healthcare industry proactively embracing a new system design that is a win-win for all stakeholders.

What if human data was recognized as personal property? If so, it would be a win-win for healthcare providers, data companies, pharmaceutical companies, patients and healthcare consumers.

A company founded this year, Hu-manity.co, has been on a mission to do just this. It has launched a consumer-facing app built on the IBM Blockchain to provide healthcare consumers with a title or deed of ownership for their data. It allows individuals to declare their desired permissions for future uses of their data and enables their healthcare data to be permanently labeled with their unique code when collected, aggregated, sold, or bought.

While this may be a boon for the consumer, what does this mean for business?

Human data ownership does not necessarily disrupt data collection, aggregation, selling or buying. When done correctly, it makes it easier for all stakeholders in the current data supply chain to meet a higher level of regulatory and ethical compliance, have a better posture of trust and transparency, and benefit both the beginning of the supply chain (individual healthcare consumers) and the end of the supply chain (most often pharmaceutical and insurance companies) simultaneously.

Most stakeholders in the healthcare data supply chain have processes to protect the status quo, in which human data is deidentified and not regarded as personal property. Forward-looking companies will thrive in the new property-centric industry design.

Contrary to what we have become accustomed to hearing from the tech press, change does not always mean disruption.

Hu-man.ity.co will demonstrate its new model at the CNS Summit in November.