The Precision Medicine Initiative at SXSW 2016

In President Obama’s 2015 State of the Union address he announced the Precision Medicine Initiative (PMI). Precision medicine is essentially health care that’s catered to you – taking into account individual variability in genes, environment, and lifestyle. Through advances in research, technology and policies that empower patients, the PMI will help to create better individualized care.

Thanks to Periscope, I watched a discussion about the President’s Precision Medicine Initiative at SXSW 2016, involving Claudia Williams, a senior advisor to the White House, John Wilbanks, Chief Commons Officer at Sage Bionetworks,  and Dr. Taha Kass-Hout, Chief Health Infomatics Officer at the FDA.

Claudia Williams gave an update on the progress they have made since the initiative launched almost exactly one year ago – trying to initially solve the underlying problems in research and health care. They are doing this in four ways:

1. Making research participants partners – The National Institute of Health is partnering with Vanderbuilt and what was formerly Google Life Sciences to quick design and interate what direct participation will look like.  They are also working to make it easy and seemless for people to participate in research – using phones or social networks. Participants should have the opportunity to learn – and will get both their own data as well as the learnings form the research.
2. Breaking data silos – The data from this research will be open and accessible to all disciplines of scientists. This is not the case now.
3. Accelerating these all together- Research needs to be a “team sport” where more disciplines are collaborationg to solve problems together. Many research companies are signing on to solve these problems together.
4. Using the government as a platform- This is an “all government effort,” where every arm of government is contributing to this effort, from the FDA to the Veteran’s Administration.

The FDA is looking at more reliable genetic testing to make sure the best information is available when you’re using that data to link genetics to certain diseases.  They are focused on analytic benchmarking to compare data across people and companies that are involved. They’ve only been at it for about three months at precision.fda.gov, but already have over 1000 samples which have been analyzed and compared.

Finally, in order to make all of these things happen, medical research and technology need to come together… and these are very different cultures.  The “move fast and break things” culture that exists within technology doesn’t fit with the health care industry. Finding a way to make this convergence happen – from a legal, technical, useful perspective – is going to be perhaps the greatest challenge government has taken on in quite some time.

If it does actually happen, it will be revolutionary.  In the same way that the Human Genome Project was sponsored by the government and made knowledge and data open and available (i.e. it’s not owned by any one company), this project has the potential to do the same thing. The $4 Billion the government initially invested in the Human Genome Project is already estimated to have spurred a $964 Billion return (that’s 178X ROI).