President Obama's Precision Medicine Initiative, which he announced in the 2015 State of the Union address, was met with much enthusiasm from the healthcare industry. Few in the industry criticize the push for personalized, individualized care. However, such an undertaking relies on health IT and shares the same barriers that health IT itself is currently facing.
One main element of the initiative is the assemblage of a database, presumably by using EHR data, containing data points of one million individuals. However, in using EHRs to pool data, the Precision Medicine Initiative faces challenges pertaining to interoperability and security, which are issues the health IT world at large faces, writes Niam Yaraghi, a fellow in the Brookings Institution's Center for Technology Innovation, on Brookings' TechTank blog.
The inability of disparate IT systems to communicate and share information with one another is no new revelation, but its effects in the Precision Medicine Initiative could be detrimental. "Given the current lack of interoperability between EHR systems, it seems highly unlikely to be able to obtain a complete medical history of one million Americans," Mr. Yaraghi 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."
Mr. Yaraghi suggests researchers involved in the initiative negotiate with medical providers and EHR vendors to gain future access to medical records to ensure a complete medical history. He also says doing so could create technologies used for purposes beyond precision medicine.
Security poses two challenges to the initiative, writes Mr. Yaraghi. First, the datasets and database need to have appropriate security technologies and strict privacy regulations, especially given the increase in cyberattacks aimed at health information.
Secondly, Mr. Yaraghi says the data fusion process — merging and analyzing different data sets — presents the most important, but least discussed, threat. The results of this type of analysis can produce data on patients formerly unknown to patients or researchers.
"It's practically impossible for a person to provide consent to researchers in this scenario because the patient can't know what details will be able to be uncovered about their lives in the future with the use of advanced analytic techniques," Mr. Yaraghi writes. "The scale of this initiative and the large population of volunteers that it requires will only intensify the concerns over privacy and the implication of its possible findings about a large number of individuals."
To combat these challenges, Mr. Yaraghi suggests routine privacy audits by third-party organizations, and results made publicly available. Additionally, he writes that in the event of a data breach, the initiative should take two actions: terminate patient participation in the study and automatically give patients "significant" financial compensation without a lawsuit.
"These conditions increase the incentives of the precision medicine initiative to proactively implement security technologies and strictly adhere to privacy policies to prevent data breaches from happening," Mr. Yaraghi writes.
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