Setting Data Free to Save Lives

Precision medicine’s breakthroughs are achieved with data—so why is hoarding still such a problem, and what can be done to solve it?

When it comes to genomic data, more is always better. The more genomes that are sequenced and shared, the more we learn about the genetic components of disease, and the more likely we are to develop lifesaving treatments. 

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"Sharing data
is essential
for progress
in biomedical

- Francis Collins
Director of the National
Institutes of Health (NIH), and

- Kathy Hudson
NIH Deputy Director for
Science, Outreach, and Policy

"There's a perception
that there are no
business incentives
to share data."

- Bryce Olson
Global Marketing Director for
Health and Life Sciences, Intel

"If you compare
healthcare to
other industries,
it's been a bit
behind from
the perspective
of digital
so it's very exciting
to see that we are
finally harnessing
data in new ways."

- Jennifer Esposito
Worldwide General Manager,
Health and Life Sciences, Intel

Build the Right Infrastructure for Data
Once the data is found and funding secured, the technological challenges still need to be addressed. Datasets need to be accessible, standardized with a common vocabulary, and reusable (i.e., shared via open licensing).

But how does one grant access to the data? Moving large datasets is not feasible.

“This is where a federated model is so important,” said Jennifer Esposito, Intel’s worldwide general manager, health and life sciences. “You get the benefits of sharing without the problems of actually having to move data from one place to the other.”

Healthcare providers will need to closely track the still-evolving data integration and classification standards. Until the industry settles on common standards, data center architectures must allow for flexibility and integration.

"That’s why it’s critical to build data center infrastructure that can help healthcare move to the cloud securely and efficiently," said Esposito. “As healthcare digitally transforms, we have to think about building the right foundation to scale out over the course of the future.”

Consent polices also need to improve to facilitate more effective data sharing.

“The irony with our consent rules today is that patients don’t want it hoarded,” said Olson. “Patient genomic data is ultimately owned by the folks who provided the samples to get there—the patients—and they don’t want it hidden away.”

Getting those patients educated and involved is the real key to making progress.

“One way to drive more data sharing is making patients aware that their data is extremely valuable and holds the keys to unlock new insights,” said Olson. “We need to help patients see the value when we ask their consent for greater use of their data,” said Olson. “Patients want to know if a new trial opens up offering access to a drug that is a great molecular match for them. The effective, collaborative use of their data can make that happen.”

And the technology underpinning it all needs to be easy to use and accessible.

“Ultimately, institutions need to figure out how to collect and access data that is much greater than they could ever hold individually, and enable this to happen easily," said Olson. “We really need to make this as easy as an online banking transaction for the physicians trying to bring the right treatments to the right patients.”

Breaking down these business and technological hurdles will allow precision medicine to move into the fast lane.

“I've been in healthcare for about 20 years, but I've also been a patient,” said Esposito. “And in both of those cases I've seen the technology really coming into play. If you compare healthcare to other industries, it’s been a bit behind from the perspective of digital transformation. So it’s very exciting to see that we are finally harnessing data in new ways. The next step is to learn how to share it.”

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