Excerpt – The U.S. approach to data sharing stands in stark contrast with standards now in place in other parts of the world, including Europe’s General Data Protection Regulation (GDPR). More importantly, it goes against what people say they want, which is to freely share their data for scientific or research purposes that help others, but also to share in the upside when their data are highly valuable, such as when they help lead to the discovery of a multibillion-dollar drug. [..]
But unlike money, no global infrastructure exists to govern, manage, and watch data transactions, and no collective institutions exist to protect data security or integrity. Health care data in particular exist in a wild west environment governed by permissive regulations that enable data sharing and transfer among entrenched interests rather than protecting individual’s privacy. [..]
Today’s system allows data monopolies to operate unfettered and reap profits while data laborers — in this case, patients and health care professionals — receive no compensation for their essential contributions. This status quo is unacceptable, antiquated, and exploitative. Yet the health care landscape is dotted with companies whose only value proposition is aggregating and reselling data created by patients and doctors. [..]
Two things need to happen to empower patient privacy and economics when it comes to health data.
First, patients, health care professionals, and consumers in general need to know and understand more about how health companies and others are sharing and using their data.
Second, the health data economy must become more equitable. When Flatiron was bought for $1.9 billion, how much of that value had been generated by cancer patients whose data was Flatiron’s business? A lot — yet they received nothing from this transaction. They may even have received negative value, with some struggling to pay for their cancer treatments while Flatiron sold their data to Roche, one of the world’s largest makers of cancer treatments. [..]
People are happy to share data if they think it provides health benefits to themselves or others. Their altruism stops, though, when they feel that companies are exploiting them, or profiting from data sales on one hand while sending them hefty bills on the other.
One solution to consider is following the logical conclusions that arise when data and value are thought about in the same way as money and banking. While banks keep their customers’ money safe and pay interest on it, they find other productive uses for it while it’s under their care. People can move money between different banks, too, if they’re unhappy about the service they’re getting or worried about a security track record.
We need the same institutions and functionality for health data.
New technologies make this vision possible, helping ensure ethical and responsible data utilization as well as distributing profits not only to data brokers and curators but also to data generators. A lot can be learned from financial institutions on how to implement this model; the framework is there, and the need is stronger than ever.
Full article, J Hinkel, 2023.2.24