1. DiGiulio, Sarah

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NEW YORK-"I want to be able to sit at a computer with the genome of a cancer patient and ask, 'Are there any other patients like my patient around the world? And, what are their outcomes?' I want a million cancer patients' genomes," said Brian Druker, MD, Director of the Oregon Health and Science University Knight Cancer Institute, speaking as part of a panel of experts from academia, industry, and advocacy during a session on the future of data sharing in medicine-both personal data and big data-here at the 2015 Partnering for Cures meeting (sponsored by FasterCures, a center of the Milken Institute).

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Oncology is doing that-i.e. moving in the direction of making that type of data sharing possible, Druker explained. But there are several challenges still including shifting away from the tendency to hold on to data in an effort (or hope) of making a profit off of that data, as well as creating a secure system where patients' privacy is guaranteed to be protected, he said. And the panel agreed other challenges for big and small data sharing include legislative barriers, realistic business models, and quality assurance


Along with Druker, who is also the JELD-Wen Chair of Leukemia Research at OHSU and a Howard Hughes Medical Institute Investigator, the panel included: Linda Avey, Co-founder and CEO of We Are Curious, Inc.; Stephen Friend, President of Sage Bionetworks; Ben Heywood, Co-founder and President of PatientsLikeMe; and Michael Milken, Chairman of the Milken Institute and Founder of FasterCures. The panel was moderated by Gillian Tett, U.S. Managing Editor and Columnist at the Financial Times.


The panel discussed the next steps in breaking down the silos across the full health care industry to allow more data sharing-big and small. And in an interview after the panel, Druker told OT more about what makes data sharing so interesting and about a new precision medicine analytics platform OHSU is working with Intel to develop.

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1. What would you say was most interesting about this discussion today between academia, industry, and advocacy about data sharing?

"To me the most interesting idea is that we can turn medicine from a transaction-oriented to patient-oriented profession, where patients have more control of their data.


"We're starting to see that change-patients want their data shared. And if we can get past this view that there's money to be made from the data as opposed to patients can be helped by sharing data, I think that we can actually accelerate progress."


2. During the panel, you mentioned that oncology data would be sharable by 2020?

"It's happening. We're working on a project with Intel now to allow more access to data-the Collaborative Cancer Cloud (CCC). Our goal is by 2020 to be able to have enough data that we can analyze a patient's genome and then have a treatment regimen designed based on that data, and have enough data aggregated in this kind of system that we can do that.


"Will that be all the cancer data? I don't know. But if we reach a tipping point where we have numerous large institutions sharing data, everyone's going to want to get on board. Now, whether that's 2020 or 2022 I wouldn't say. But our goal is to progressively scale this over the next five years."


3. What are the next steps to make this type of data sharing scalable?

"Data sharing is happening in a lot of different places, and we need to aggregate and integrate. Part of the issue is deciding how to standardize data shared across multiple institutions, ASCO's CancerLinQ, and other databases. We need to be able to share data in a standardized manner.


"And this is going to start with cancer-but it can be expanded into cardiovascular disease, Alzheimer's research, you name it."


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