The conference—known formerly as the mHealth Summit—falls under the HIMSS umbrella and has recently expanded its scope to include a broader range of topics. 

Precision medicine took centre stage from the start with the opening keynote presentation, “Accelerating Precision Medicine,” that included Michael McManus, the senior health and life sciences solution architect at Intel Corporation. McManus pointed out that if we were to sequence everyone and store the resulting data set, it would consume 40 percent of the world’s existing data-storage capacity.

Dr. Nephi Walton, a biomedical informaticist from Washington University School of Medicine, echoed this sentiment during his presentation. “Despite our limitations,” he said, “our ability to produce data for precision medicine is more advanced than our ability to use that data.”

In a panel session led by Intel, one panelist commented that data is useless unless analytics are involved. Another panelist made this thoughtful point: “Why share data at all? Why not share the analysis instead?” Doing so, it was suggested, could remove the barrier of consent.

EHRs have been slow to support the storing of genomic data. Many have been built on top of older technology that provides no way to use decision support or perform robust analytics.

At the same time, for precision medicine to really make a difference, we need to expand the cohort and make sure to include markers for behavioural health, said Greg Simon of the White House Cancer Moonshot Task Force. “We have a problem of technology changing much more quickly than our attitudes,” he said.

For all of our progress with precision medicine, if we don’t shift the burden off of the patient, the initiative won’t thrive. Kevin Johnson, SVP of health information technology at Vanderbilt University Medical Centre, pointed out that “homeless patients should not receive medications that have to be refrigerated. That’s precision medicine.”

During a panel on using personal connected health for pain, addiction, and healing, Dr. Shai Gozani, the president and CEO for NeuroMetrix, said, “Consumers are spending $20 million per year of their own money on alternative approaches for pain. They are active and engaged, and looking for solutions.” This aligns with expectations that, with the cost of genomic sequencing dropping drastically, from about $10 million in 2008 to $1,000 or less today, more consumers will soon be seeking their own answers for their health conditions.

Precision medicine is not just about genomics and sequencing DNA. It puts the patient at the centre of their care. There still seems to be a hefty debate about who owns the data. Some states have specific laws about this, while others have no position. Is the real issue ownership, or is it the access to our own health data? The question of ownership and access will need to be addressed to move the Precision Medicine Initiative forward, especially if we were to follow McManus’s suggestion of sequencing every infant as soon as they’re born.

The good news is that there are technology companies focused on furthering precision medicine and providing future-proof solutions that will not only handle the massive amount of data required for precision medicine, but aggregate, normalise, and analyse the data with powerful custom data-modeling capabilities and present the data with tools built on an open architecture. 

With the boost from the passage of the 21st Century Cures Act this week which, among other things, includes $4.8 billion for precision medicine, we can expect to see significant gains over the next two years in this crucial initiative.

Orion Health CEO Ian McCrae discussed the rise of precision medicine at TedxAuckland. Watch the video now!