Hu-manity.co, a startup, is quickly following through on its initial announcements to build a personal data-ownership service, starting with the health records that are of interest to pharma and healthcare companies (who might now pay individuals for access to the data). On Sept. 6, it launched an iPhone and Android app, #My31, an allusion to the idea that “everyone has the legal right to ownership of their inherent human data as property,” and an extension of 30 human rights recognized by the United Nations. This app will operate within the IBM Blockchain Platform, which is generally based on HyperLedger that IBM has been a leader in developing. The company also announced the appointment of Dr. Dan Karlin, formerly head of clinical, informatics, and regulatory strategy for digital medicine at Pfizer, as its Information Transformation Officer (new businesses require new job titles, we guess).
“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,” says Karlin. Hu-manity.co envisions “a world where real world data converges on clinical trials data, unlocking the potential to understand the complexities of disease and health more completely.”
For its part, IBM’s Adam Gunther, director of blockchain trusted identity, says that his company has long supported the concept of individual ownership of personal data; it is also participating in the blockchain/data rights field through support of the Sovrin Foundation, a nonprofit effort to establish useful standards for data rights and data privacy.
Hu-manity.co is nothing if not ambitious: while rights to personal health records could be considered low-hanging fruit (in that there is a ready market for such data, as Hu-manity.co co-founder, Richie Etwaru, knows well from his prior work at IQVIA), the company intends to go after personal geographic data and purchasing data, which are highly valued by the social-media companies globally. Hu-manity.co has a staging plan where, based on how many millions of users claim their data rights through the platform, new incentives and services will be provided. A viable offering to the pharma industry is expected by early 2019.