President Barack Obama's Precision Medicine initiative hinges on gathering data from millions of individuals, but there are challenges the healthcare industry will face when it comes to collecting that information, says Niam Yaraghi, a fellow in the Brookings Institution's Center for Technology Innovation.
Interoperability and security are two issues plaguing the industry, which also will play a role in Obama's initiative, the aim of which is to increase the use of personalized information in healthcare
The first problem is the inability for electronic health record systems to share information seamlessly, Yaraghi writes at Brookings' TechTank. With the current lack of interoperability of EHRs, it seems highly unlikely the industry will be able to obtain a complete medical history of one million Americans, he writes.
"To succeed, the Precision Medicine initiative has to either overcome the lack of interoperability problem in the nation's health IT system or to find a way around it," he writes.
For now, those working on the project should get access to what medical records they can and then work with providers and vendors on gaining access to future records, Yaraghi says.
When it comes to privacy for precision medicine, problems the administration will face include setting up secure technologies and privacy regulations surrounding the project so that information cannot be accessed by malicious actors. In addition, when researchers begin to analyze data, they may uncover information patients do not want shared or known.
To ensure safety of information privacy, audits should be conducted by third parties, Yaraghi says. And if a data breach occurs, a patient's participation in the study should be canceled and the patient should get financial compensation.
"The Precision Medicine initiative is a 'Big Hairy Audacious Goal' with exciting promises and priceless implications," he writes. "[H]owever, to believe in its future success, it should first propose a plan to resolve the above mentioned patient privacy concerns and health IT challenges."
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