Hu-manity.co has launched a new smartphone app that acts as a global ledger where people can stake claims to their personal data. The company is starting by treating healthcare data as a personal property right.
Powered by IBM’s blockchain technology, the ledger will log people’s authorization for commercial use of their personal information, or not. Users can choose to share none of their information with third parties, or they may provide consent for their medical data to be used for specific purposes, such as cancer research.
The idea is that, once the app gathers enough consenting users, it will be able to leverage richer, higher-quality data for pursuits in pharmaceutical research—that data actively gathered and given by choice may be more complete and more useful compared to passively gathered, anonymized information, and that explicit, upfront consent carries value of its own.
Hu-manity.co also aims to build its network into a marketplace where people can receive compensation for allowing access to their data. The Princeton, New Jersey-based company estimates the global data market may be as large as $150 billion to $200 billion, but believes it lacks a central clearinghouse to buy and sell.
The ledger itself, meanwhile, will be decentralized, employing an immutable blockchain network that allows individuals and organizations to interact with people’s consents in a more openly transparent and secure manner.
The company bills personal data ownership as the “31st human right,” following the 30 codified by the United Nations’ Universal Declaration of Human Rights in 1948. It is starting with healthcare data before possibly moving on to other forms of information such as geolocation data, energy use or consumption preferences.
The app, My31, does not store any personal or medical data, but simply offers a record of a user’s property ownership and data-sharing preferences. The data itself will remain where it is currently stored, such as in electronic medical records or in research databases.
“By creating a global consent ledger built on the IBM Blockchain Platform, people, corporations, and the monetization of human data can co-exist sustainably,” said Richie Etwaru, founder and CEO of Hu-manity.co.
“People will enjoy greater levels of security, privacy, and control while corporations will be able to lawfully benefit from access to higher quality data that has the explicit consent and authorization of its rightful owner,” said Etwaru, former chief digital officer at Iqvia.
Late last month, Hu-manity.co brought on former Pfizer executive Dan Karlin to be its industry transformation officer, to liaise with the pharmaceutical industry and help it take advantage of its data ledger.
“I am excited about showcasing how explicitly consented data can help drive better and more efficient research, to more quickly get drugs that work in the hands of patients,” said Karlin, who served as Pfizer’s head of clinical, informatics and regulatory strategy for digital medicine.
In addition, the company’s advisers include Craig Lipset, head of clinical innovation at Pfizer, Milind Kamkolkar, chief data officer at Sanofi, CNS Summit’s chief curator and chairman, Amir Kalali and Constellation Research CEO Ray Wang.