BY AMERICAN HEART ASSOCIATION NEWS

1109-News-SS15-Gary Gibbons_Blog

The end of Daylight Savings Time was a sleep disrupter. Body clocks had to adjust.

How’d it go for you? What happened to your sleep rhythms? Did you have other health ramifications?

Sensors and other technological advances can generate such raw data and a new era is forming around the collection and interpretation of it. This is part of the foundation of Precision Medicine, which was the subject of a presentation at Scientific Sessions on Monday by Gary Gibbons, M.D., director of the National Heart, Lung, and Blood Institute.

Gibbons used the recent time change as an example of the power and promise of Precision Medicine.

“Imagine if you could get tens or hundreds of thousands of people to share their data about what happened to them when we shifted the timing of when they get up and go to sleep by an hour,” he said in an interview following his lecture and a question and answer period with moderators. “If people are willing to volunteer and participate in something where we strategically ask certain questions, and we monitor the data for its research integrity and accuracy, then we can do things to scale in ways that weren’t imaginable 10 years ago.

“Those are the kinds of things that are now possible.”

This concept is in its infancy. Having the tools to answer myriad questions is the first step. Next comes figuring out how to make it work.

Issues range from accuracy to privacy, from reliability to methods for sharing data. Finding those solutions are among the aims of the Precision Medicine Initiative announced by President Obama during his State of the Union address earlier this year.

A key component in the Initiative is creating a study group of at least 1 million Americans willing to share their health data. Enrollment is expected to begin early next year.

Gibbons stressed the importance of people not just signing up, but being actively involved in the process.

“It’s their data,” he said. “So they really ought to be guiding what happens to their information that’s part of the research development and creation of the database and cohort. … We also need to think about how we can return the results to the participant so they can be empowered to understand the information and engage their care providers in helping interpret that information and decide what’s best to do.”

In his presentation, Gibbons illustrated what the study may do for a participant through the tale of a fictional 40-year-old, African-American woman named Carla.

Carla’s DNA profile reveals that she’s at a higher risk of kidney and cardiovascular disease. She chooses to be monitored, and that leads to a discovery of high blood pressure. She’s then recommended lifestyle modifications to help control her blood pressure. She also begins taking blood-pressure-lowering medicine and she keeps it in a “smart bottle” that notifies her if she misses a dose.

“As a result of this prescription, her blood pressure normalizes and Carla remains healthy,” Gibbons said. “At the end of the day, that’s part of our shared mission, that’s part of the opportunity of Precision Medicine and that’s hopefully what our ongoing partnership will do for the Carlas of the next decade.”

Gibbons also brought up a key point about the treasure trove of data that will mark this new era: We’re going to need people to sort through it all.

He laughed as he noted that while a human genome can be sequenced in less than a day, “actually analyzing it still takes much more than a day.”

“I think this is an incredible challenge, but it’s also an incredible opportunity to bring in new thoughts – mathematicians, computer scientists, economists, physicists – people who think about Big Data and data sets, and how and what those data mean.

“I think we need to encourage more people to come in and help us collectively solve this problem for the nation. We need more data scientists, we need more quantitative scientists and we are developing a platform of training programs related to quantitative science.”