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Let’s Not Make ‘Precision Medicine’ an IT Horror

February 4, 2015 By Sam Brusco, Associate Editor

You can't spell "initiative" without IT!About two weeks ago, during his State of the Union address, President Obama unveiled the initiative (with a $215 million budget) to fund “Precision Medicine”. He didn’t go into a huge amount of detail explaining it, but put simply, it’s a more personalized approach to treatments. It entails an integration of biotechnology, science, and medical records in order to develop targeted patient therapies. The goal is to stage a complete departure from the traditional “one-size-fits-all” procedures for treatments and drug development.

The success of this strategy hinges on a constantly updated genomic database. The data will be gathered by the National Institutes of Health, elicited from a one million strong “cohort” of volunteers. (Though it’s unlikely that the NIH will recruit these people afresh, as they have 200 existing studies to rely on.) The NIH will receive most of the funding ($200 million, to be exact) for its study, as well as to its National Cancer Institute for cancer-specific genomics and treatment.

This is pretty exciting news. The outcome of this project, ideally, is an enormous database containing the genetic profiles and health records of, at the start, a million people! While a sample size of one million people isn’t nearly enough to “individualize” treatments in the most literal sense of the word, it can break down the population into more clearly defined subgroups. This will definitely help to determine which types of treatments or devices are effective for certain groups of patients, and which treatments may be less effective or even harmful.

However, my smile faded just a little when I noticed that only a small part of the budget ($5 million) is going to the Office of the National Coordinator for Health Information Technology (ONC). This is the group in charge of making sure everything involving Electronic Health Records (EHR) is integrated and compiled efficiently. The data the NIH hopes to collect won’t all come from one place – it’s likely that many EHR systems will be used among the 200 cohorts. Even if as low as ten individual EHR systems exist among the cohorts, (and that’s a very low estimation) that’s ten different systems that have to be combined into one database. (Cue IT professionals recoiling in horror.)

And to put it bluntly, right now EHR systems are a little bit messy.

Issues will undoubtedly arise because even though this initiative calls for a centralized EHR system, the federal government hasn’t implemented any data standards. There is too much of a lack of interoperability between EHR systems developed by different healthcare companies. A ten year plan for interoperability has been put into place by the ONC, but no one wants to wait ten years for the precision medicine initiative to become user-friendly enough for real progress to be made. I was hoping for a one year plan to make all of the necessary changes, but the ONC might have their hands tied after receiving such a small portion of the budget.

I’m hopeful for the Precision Medicine initiative – it has the opportunity to make real leaps forward in personalized medicine and effective treatments. However, the same technology seeking to help clinicians may prove cumbersome in the long run, unless some sort of regulatory strategy is implemented. It would be a real setback to have such a revolutionary approach to healthcare bogged down in IT problems.

“mdo
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