I was honored to be invited to participate in the White House Precision Medicine Initiative Summit last week. There were 200 people packed in the small room for the event. I knew many of them from other government committees I have sat on, including DJ Patil, the Chief Data Scientist at White House Office of Science and Technology Policy and Rob Califf, who now heads the FDA. The President was not on the agenda and we were told that Vice President Biden had given his regrets that he could not attend. So it was a surprise when we were told to stay seated “for a very special guest.”

I have never sat in a room so intimate, so packed and so quiet as we waited. At last, a moderator came on stage and introduced the panel as they filed in—the last panel member to enter was President Obama.

The President spoke with us for an hour on a panel with researchers, physicians, and patients about the urgent need to fundamentally to change the way we conduct research—to use the new technological tools we have to look at the treatment patterns in big data and the new technical tools afforded in diagnostic and genetics (“little data”). Both of these allow us to tailor treatments to individual patients. One of the panel members was a young woman who used genetic testing to determine that she had a high risk of acquiring prion disease—which causes a form of early, rapidly progressing dementia.  When she got the news—she decided to become a researcher working for solutions for patients with prion—solutions which she hoped might change her own future.  A description of the event and a video of the fireside chat with President Obama are here.

The Precision Medicine Initiative holds great promise for patients with Lyme disease who have been stuck with poor diagnostic tests and “one size fits all” treatment approaches that fail too many patients. It is why we at LymeDisease.org launched our own big data project, MyLymeData.  This project allows patients to pool their data to help researchers determine which treatments work the best and why some patients get better while others don’t improve.  Over 3,500 patients have enrolled in the past few months.

If you have not enrolled in MyLymeData, please enroll today!

To those in the room, it was clear that President Obama “got” the issues important to patients. He understood the urgency to move medical science into the 21st century to develop faster cures. At the same time, he understood the need  to protect patient privacy in the big data era. He shared his viewpoints on some issues that are critical to Lyme patients:

• Patients should own and control their data
• We should ensure that patient data is not misused
• Researchers should not hoard data

I live tweeted the event and have included some below.

The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org. You can contact her at lbjohnson@lymedisease.org. On Twitter, follow her @lymepolicywonk.