For a program like the Precision Medicine Initiative to be successful, the genomic research infrastructure needs to be improved, according to a white paper from the Center for Data Innovation and HealthITNow.
"[W]e believe that public sector leadership of a project to sequence and analyze the genomes of a million data donors — the Precision Medicine Initiative — would do much to spur innovation and create a business case for the build-out of America's genomic research infrastructure," the organizations write.
US President Barack Obama announced the Precision Medicine Initiative in his State of the Union address this year, and it's since been described as a $215 million program to develop a nationwide cohort of a million people whose genetic, metabolomic, medical, lifestyle, and other data will be collected to better understand disease and improve research capabilities.
But to make the best use out of that data, the Center for Data Innovation and HealthITNow say there must be better data sharing, patient engagement, and new privacy laws.
In particular, they note that there needs to be better interoperability between electronic health record systems. Currently, they say that the two common commercial systems don't work well together, limiting physicians' access to other records. This initiative, they say, present an opportunity to develop standard protocols.
"At a minimum, strong interoperability requirements are essential," the paper says. "These should include standardized vocabulary and data, and standards-driven protocols for sending, receiving, and querying records."
They further say patients should be educated to make better use of their genomic and other data, and argue that patients should have access to that data.
Finally, it says that some laws meant to protect the privacy of research participants should be re-vamped. "If research dollars are to be spent wisely under the Precision Medicine Initiative, it is essential that Congress adopt more pliable privacy standards, to ensure that donated genomic and phenomic data are broadly available to institutions and researchers without the fear of crippling penalties," the paper adds.
H/T: MedCity News