Thursday, October 6, 2016

Mind Blown: PCT US 2016 on Big Data

Day 2 of Partnerships in Clinical Trials US (PCT US) was, as the title to this piece suggests, pretty incredible. From hearing about IBM Watson’s vision for what is essentially population health times a gazillion, to more sobering facts about failures in Alzheimer’s research and incremental progress in developing countries around diseases that are 100% eradicable, by noon my head was spinning. And if that wasn’t enough, I listened to Dr. Trudie Lang share her fascinating experiences setting up rapid-deployment (think near-time) trials to stem the harm of both Ebola and Zika. I found her to be awe-inspiring.

So given these varied lectures, from topic to tone, was there a single thread takeaway? Indeed there was, and that would be DATA.

According to Dr. Kailash Swarna from IBM Watson Health Group, each person generates 1100 terabytes of data. Now I don’t know how much that is exactly, but I gather it’s more than a breadbasket. I had to laugh (not out loud mind you) as when Dr. Swarna was speaking, I thought back to a recent conversation I had with a colleague around the impetus for IBM buying The Weather Channel. According to my colleague, it was because of the massive amounts of data The Weather Channel has. But I digress. 

After Dr. Swarna’s visionary talk we heard from Dr. Martin Tolar, CEO of Alzheon, Inc, who presented data on previously failed trials that had looked at slowing or stopping Alzheimer’s. It was quite stunning to hear that in the past ten years, there have been no new drugs developed to treat this disease which is pretty well set-up to become a public health crisis as our population ages. As Dr. Tolar described, his company’s goal, which they are well on their way to achieving, is to find adults in a pre-dementia state which, given the mounds of structured and unstructured data that each of us generate through the course of our lives, medical and personal, is something that is actually achievable today. After all, these are the ideal (and often genetically pre-disposed) targets that can be in a pre-disease state for years and not even possibly recognize it themselves. Yet their data tells the real story.

In an afternoon session, Joe Dustin from Medidata talked about data capable of being collected subjectively from our devices and objectively from an increasing number of wearables – which paint a pretty darn accurate story of patient activity. In fact, as I type this my phone sits just inches away from me and I can take a step back and appreciate how much I truly physically interact with it, and the story it can tell about me beyond what I like to read and research. This is very new territory that has tremendous applicability in clinical trials – in 20 years from now we will look back and wonder how trials were ever executed without devices as an integral component.

And finally there was Dr. Lang. She summed up the reality of data in clinical research with one impactful sentence: “We’re so bad at sharing data in science.” And there you have it. Data is everywhere and is the key to solving some of our greatest medical challenges, yet competition - from fears of patient poaching, to pharmaceutical companies racing for either the next blockbuster or holy grail - tend to be averse to sharing it. Let’s face it, in this business space, data is one’s competitive advantage.

The several thought-provoking sessions I attended at PCT US certainly raised more questions than were answered for me, which is just another way of saying ‘job well done’ to the speakers. Curiosity and even blind ignorance keep us reaching for more, acknowledging that we don’t know all there is to know, yet only collaboration (beyond in spirit alone) will help deliver the results that millions of patients are in need of.

When she is not working as a healthcare marketing and PR professional, Jennifer Crowley is mom to an eight-year-old son with cancer. His illness has largely driven her interests in patient advocacy, pediatric cancer research and personalized medicine. It's great to learn because knowledge is power!

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