LYMEPOLICYWONK: Lorraine Johnson speaks about MyLymeData to help find a cure for Lyme disease
In February, the publishers of Science magazine, the American Association for the Advancement of Science (AAAS), held its annual conference– one of the most mainstream prestigious events of the year for all types of scientists and science reporters. It was a pivotal moment for Lyme disease, which took the spotlight on a panel discussing the potential of big data as a game changer for Lyme disease.
I was delighted to be on the panel with DJ Patil, Chief Data Scientist from the White House Office of Science and Technology and Dr. John Aucott from Johns Hopkins Medicine. Because the AAAS did not record speeches, I am posting a powerpoint with audio of my talk, Big Data and Patient Powered Research here.
The only way we are going to increase our understanding of chronic Lyme disease and be able to answer the important questions that directly impact patients’ lives is through big data projects like MyLymeData. It is going to take individual patients coming together and sharing their information that will accelerate research to figure out this disease.
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 firstname.lastname@example.org. On Twitter, follow her @lymepolicywonk. If you have not signed up for our patient centered big data project, MyLymeData, please register now.