What precision medicine can learn from Obamacare

The era of one-size-fits-all medicine may soon come to a close.

Last month, the Obama administration pledged $215 million to a new Precision Medicine Initiative, which will advance research into treatments tailored to individuals according to their genetics and personal health history. 

{mosads}The initiative’s success hinges on the federal government’s ability to harness the power of information technology to conduct medical research. Unfortunately, as the botched rollout of HealthCare.gov shows, the feds have proven spectacularly incompetent at managing large technology projects.

If the Precision Medicine Initiative is to achieve its promise, then the federal government must make smart investments in IT — and avoid the many technological mistakes it made while implementing Obamacare.

The Initiative is a product of a 2011 report by the National Academy of Sciences that called for a new way to categorize diseases — one that looks beyond symptoms to their underlying environmental and genetic causes.  

At present, scientists can genetically analyze some diseases, like breast cancer, and prescribe treatment based on a patient’s genetic makeup. But the vast majority of diseases remain genetic mysteries. This lack of understanding makes tailor-made treatments impossible. 

In order to grasp illness at the genetic level, doctors need data — and lots of it. The Precision Medicine Initiative would address this need by pooling genetic and clinical data from at least a million patients across the United States. 

Managing this massive amount of information will require extensive planning, coordination, and expertise in health information technology. 

The government’s last large-scale health technology initiative — HealthCare.gov — lacked all three. 

The federal insurance exchange web site crashed upon launch in 2013. Millions of early enrollees encountered error messages, delays, and frozen screens.  The site shut down for five hours just before the first open enrollment deadline. 

The drama has continued this year. In February, the government announced that it had sent incorrect tax information to about 800,000 people who bought health insurance through HealthCare.gov. That could delay their tax refunds.  One day before this year’s enrollment deadline, a technical glitch related to income verification prevented an unknown number of customers from submitting applications.  

All that failure hasn’t come cheap. The government has spent $2.2 billion thus far to build and repair the website.  

HealthCare.gov also poses security risks to users. Last year, a hacker reported that he had obtained 70,000 records from the site containing personal identifying information.  

In September, the Centers for Medicare and Medicaid Services, which run the website, reported an intrusion on a test server. Among the reasons for the breach? No one at HealthCare.gov had bothered to reset a default password set by the server’s manufacturer.  

Imagine that those servers held not just names, addresses, and financial information, but also genetic code. The threat of theft would pale in comparison to the threat to privacy and health.

Precision medicine is too promising and too important to succumb to this kind of failure. Fortunately, Congress and the White House still have the opportunity to learn from the HealthCare.gov debacle.

The president must start by finding a strong leader for the Precision Medicine Initiative who can coordinate among the many agencies set to receive funds as part of the Initiative.

The feds failed to do so with HealthCare.gov. The government employed 55 different contractors on the site and never designated a single head of the project.  

Second, the Initiative’s leader should implement a plan that will ensure a successful launch. The government unveiled HealthCare.gov before it was ready in order to meet arbitrary political deadlines. The site didn’t go through proper security testing beforehand.  Whoever leads the Precision Medicine Initiative should not blindly follow deadlines at the expense of quality and security. 

Finally, the Initiative should not be launched in one fell swoop, as Obamacare was, but introduced slowly, starting with small pilot programs and scaling up from there. That way, program leaders can make sure that the technology is secure and effective before using it to store the genetic and medical information of hundreds of thousands of Americans.

There’s no doubt that precision medicine can revolutionize health care. But it can only do so if the federal government learns from the mistakes of HealthCare.gov. 

Potarazu is an ophthalmologist and the CEO of Vitalspring Technologies.