Companies Buying Health Data for Developing Products Should Pay Patients
​[Thursday, February 13, 2020]
As hospital and insurance systems monetize their patient databases by selling data to information companies like Google, they should share some of the financial rewards with the patients to avoid being accused of exploiting patient data for personal gains, according to ethicists as the University of Pennsylvania. Google and other information technology companies are acquiring unlimited, and mostly undisclosed, amounts of patient data to train their artificial intelligence (AI) algorithms for multiple product applications. Besides, developing new tools for health management, such patient data can provide a treasure trove of real world data useful for developing new uses of old drugs, new trends for treatments, bio-behavior, and many other interesting information, again with potential financial outcomes. In the process, the benefit to patients whose data will be used to create these new products is not clear. It has been proposed that patients would benefit indirectly as the products developed would help everyone. However, the ethicists suggest there should be more direct payments to the patients. Once suggestion is for the developers to set aside some funds for community development funds on behalf of relevant patient population. Under this model “companies would agree to pay a percentage of profits generated from the data into the fund. A development fund board controlled by representatives of the relevant patient community could then decide how to invest the money to achieve community benefit.” The proposal seems good on paper but from practical point of view, it seems untenable. This model relies on the goodwill of the companies to voluntarily donate a portion of their profits, something that businesses would be highly unlikely to do. Patients have practically limited rights to their data held by their healthcare providers and payors, particularly since most of the data is anonymized before sharing. So, to expect companies and owners of data warehouses to voluntarily share profits is wishful thinking. The only way to get this done is by changing laws that govern data sharing, even anonymized data, but there is no political will for that either. For now, patients can only hope that as tools developed using their information are created, they would be affordable.