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Arc Fusion Dinner Boston 2014

Arc Fusion Dinner
Boston
October 7, 2014

BIG DATA: BioBabel: Too much data, too little understanding.

Big Data

George Church and Jonathan Bush discuss big data with moderator David Ewing Duncan.

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What People Said

Program

Arc Fusion Talks

Table Discussion & Ideas

Photo Gallery

What people said

Think of all the potential for action rippling through the healthcare system every day with all the data produced and you compare it to the amount of action actually being taken with that data, it is the most fundamental miracle of ineptitude and inaction and inhumanity that I know.

Jonathan Bush

I don't think we have too much data, we may have too little understanding and too little wisdom, but we need the data, that's the first step.

George Church

Program

Table Discussion & Ideas

What health data has shocked you, surprised you or changed your life?

Table 1

Rodrigo Martinez
Table Talk Leader

Rodrigo Martinez provided a summary of what was discussed at his table:

“We talked about incentives, and how long it takes for change to take hold, but you stick with your ideas and then ten fifteen years later they might work. So we keep working on pushing the right ideas, we don’t give up on them, we keep on arguing we keep on fighting."

“We talked about different technologies merging, etc. And somebody brought up the point: what about my ethnicity? So it’s great to have all this data that has things all about you, but what about just me?"

“And at some point, someone said that the most impactful piece of technology today has nothing to do with health or science. It’s GPS. So he brought it back to everyday decisions that have value. How do we do that with this whole world of healthcare and say: Hey in a very practical way when you make a decision, where you go or not to go, how do you eat or how do you dress? Healthcare is still somewhat separated by what happens day to day."

Table 2

Alexandra Drane
Table Talk Leader

Alexandra Drane provided a summary of what was discussed at her table:

“I think all of us go to a lot of meetings and sit around and admire the problem. And I have made a personal pact I’m not going to those meetings anymore. So we translated all of our thoughts into tips or advice, and it’s not that this is right but we’re just trying to get a sense how do we do something differently after leaving this room with what happened tonight?"

This is actually a point that D—made which I think embodies the challenge of this effort, which is we’re bundling a lot of problems into one place and he boiled it down to, we’re bundling the difference between existing knowledge versus new knowledge and how do we distinguish between what we do with the data that we know."

"Another thing is: all of us need to focus on what we’re looking for and what we’re measuring because you will get them and so taking for any data driven effort to really be very intentional about your metrics we thought was very key. The example someone gave was childhood obesity. One very esteemed test pointed out to be one in five children are obese, and another extremely esteemed test–research study–showed that one in ten children were obese. Those are very different numbers, to be coming to different conclusions."

"Another thing that I think did come up earlier with George [Church] was needing to make sure people could do something with their data. Right? We have so much data, but can’t get any value. So I know all of these things–I can’t figure out which doctor to go to when I blow out my ACL. And that led to, if you’re doing something of value people will help and they will collaborate. We were talking about instances around the world where folks have together to share data about their children who have cancer. And we were talking about another example where what we needed was to understand–get people to share data about their cognitive function. I think because it gave them something back that they thought was worthwhile.”

Table 3

Jonathan Bush
Table Talk Leader

Jonathan Bush provided a summary of what was discussed at his table:

“We talked about needing more information, more data from our doctors. And J—says that she wants her doctor to certify her information about her genome, is it real, should I worry? And her doctor says: “Sorry, I can’t.” Another doctor says: “You’re not ready for this, you can’t handle this information.”

“But then we come around the table and people are saying: “Actually, I don’t want to know my genetic data.” Others say: “Why aren’t we doing more genome typing? Why aren’t you sharing more data?” So you have this interesting theme at our table about whether we’re going to create more truth with more data, and whether this will allow us to crush through death. And some people said: “I want more data,” and there are other people saying they want less. They said: “I just want to be a happy animal on the earth thinking about other things besides what’s going on at the cellular level,”

“Then we came around the room and we came up with this idea of people being responsible for knowing all the data they can. Doctors. Insurance companies. People are dying because of a lack of data. And then a caregiver says, “Yeah and anyway, this unbelievably complicated mountain of truth that we’ve developed to cure has to be explained to the smartest generation of our entire history, but we don’t know how to explain it. People at our table said that there needs to be a revolution in how we interpret and explain all of this data.”

Table 4

Jamie Heywood
Table Talk Leader

Jamie Heywood provided a summary of what was discussed at his table:

“We went into questions of ethics and whether or not data would drive ethics and how you could measure this and whether it would mean something, and the deep personal connection to what happens. Data goes from being abstract to being very personal. Which means that something has touched your life or something you cared deeply about is directly affected by data."

“There was a wonderful moment where we had this coupling of largely—I’m going to paraphrase in an inappropriate way—we don’t recognize how much of our behavior is largely habitual or programmed. And we have limited free will, followed by this dialog about what would happen if we really were actually to empower the will of the people and make democracy work in that context. What does it take to return to that? And that coupling was wonderful."

“Then we ended on this really wonderful moment where we brought it home to family. Where it was about raising kids, and the process of trying to raise kids and build a family unit and the unit of value, and how everything that we said had a specific connotation in that family and a specific moment that related to that. And it brought it all home in a very, very vivid and real way that made all of the abstractions we talk about, and the data, seem real.”

Table 5

Chris Coburn
Table Talk Leader

Chris Coburn provided a summary of what was discussed at his table:

“We talked about data that is real and virtual – which is which? And how this needs to be sorted out. What is it that informs us? We talked about data around things that re important to us, like sex, is this really being collected and understood? There was this idea that we look for a balance in our health data in terms of integrating it, making sense of it, and taking action. We don’t seem to have a clear understanding of this – data as a force in medicine is just taking shape, modern data, like genetics. People wanted this to be organized better, to be moved along so that it becomes meaningful.”

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