Jun 14 2015

Health Datapalooza ’15

by at 12:30 pm

It was a treat to all data enthusiasts alike! What started out five years ago with an enlightened group of 25 gathered in an obscure forum has morphed into Health Datapalooza which brought 2000 technology experts, entrepreneurs and policy makers and healthcare system experts in Washington DC last week. “It is an opportunity to transform our health care system in unprecedented ways,” said HHS Secretary Burwell during one of the keynote sessions to mark the influence that the datapalooza has had on innovation and policy in our healthcare system. Below are my notes from the 3-day event.

Fireside chats with national and international leaders in healthcare and data science were a major attraction. Uhealthdatapalloza.S. Chief Data Scientist DJ Patil discussed the dramatic democratization of health data access. He emphasized that his team’s mission is to responsibly unleash the power of data for the benefit of the American public and maximize the nation’s return of its investment on data. Along with Jeff Hammerbacher, DJ is credited to have coined the term data science. Most recently, DJ has held key positions at LinkedIn, Skype, PayPal and eBay. In Silicon Valley style, he said that he and his team are building a data product spec for Precision Medicine to drive user-centered design, he quoted an example of such an app, which will provide allergy-specific personalized weather based recommendations to users. Health meets Climate!

Responsible and secure data sharing of health data is not just a “nice to have” but is becoming a necessity to drive innovation in healthcare. Dr. Karen DeSalvo, the Acting Assistant Secretary for Health in the U.S. Department of Health and Human Services, is a physician who has focused her career toward improving access to affordable, high quality care for all people, especially vulnerable populations, and promoting overall health. She highlighted the report on Health information blocking produced by the ONC in response to Congress’s request. As more fully defined in this report, information blocking of electronic healthcare data occurs when persons or entities knowingly and unreasonably interfere with the exchange or use of electronic health information. The report produced in April lays out a comprehensive strategy to address this issue. She also described early successes of mining of social media data for healthcare describing the use of Twitter to predict Ebola outbreak. Lastly, she shared a new partnership between HHS and CVS on a tool that will provide personalized, preventive care recommendations based on the expert recommendations that drive the MyHealthFinder, a tool to get personalized health recommendations.

There was no shortage of exciting announcements including Todd Park’s call for talent by the U.S. Digital Service to work on the Government’s most pressing data and technology problems. Todd is a technology advisor to the White House based in Silicon Valley. He discussed how the USDS teams are working on problems that matter most – better healthcare for Veterans, proper use of electronic health records and data coordination for Ebola response.  Farzad Mostashari, Former National Coordinator for Health IT, announced the new petition to Get my Health Data – to garner support for easy electronic access to health data for patients. Aaron Levine, CEO of Box described the new “platform” model at Box to store and share secure, HIPAA-compliant content through any device. Current platform partners include Eli Lily, Georgetown University and Toyota among others.

An innovative company and site ClearHealthCosts, run by Jeanne Pinder, a former New York Times reporter for 23 years, caught my attention among software product demos. Her team’s mission is to expose pricing disparities as people shop for healthcare. She described numerous patient stories including one who paid $3200 for an MRI. They catalog health care costs through a crowdsourcing approach with patients entering data from their Explanation of benefit statements as well as form providers and other databases. Their motto – “Patients who know more about the costs of medical care will be better consumers.”

Will the #hdpalooza and other open data movements help improve health and healthcare? Only time will tell but I am an eternal optimist, more so after the exciting events last week. If you are interested in data science, informatics and Precision Medicine don’t forget to register for the 4th annual ICBI Symposium on October 16. More information can be found in this Newsletter. Let’s continue the conversation – find me on e-mail at subha.madhavan@georgetown.edu or on twitter at @subhamadhavan

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Sep 16 2014

Biomedical Data Science MeetUp

by at 5:05 pm

We were delighted to have Dr. Warren Kibbe, Director of NCI’s Center for Biomedical Informatics and Information Technology (CBIIT) kick off the discussion at ICBI’s first MeetUp on Biomedical Data Science in June.  Dr. Kibbe gave a lightning talk about a national learning health system for cancer genomics where we can learn from every patient who comes into a doctor’s office for treatment.  Although many patients support more data sharing and will consent to their de-identified genomic data being used for research it’s still mired in privacy issues, Dr. Kibble stated.  We need to lower barriers to accessing patient data.  Dr. Kibble spoke about the HHS Blue Button initiative, which will enable patients to access and download their electronic health record (EHR) data and release their information freely to doctors and others.  He also spoke about the cancer cloud pilot initiative at NCI in which public data repositories will be co-located with advanced computing resources to enable researchers to bring their tools and methods to the data essentially democratizing access to troves of data being generated by the scientific community.

Dr. Yuriy Gusev, Sr. Bioinformatics Scientist at ICBI, next discussed large-scale translational genomics research on the cloud as the second lightening talk of the MeetUp. He presented research at ICBI utilizing genomics data produced by next generation sequencing technologies including whole exome sequencing, whole genome sequencing, RNA-seq, miRNA seq, and an area we hope to get into in the future – epigenomics.  The projects he discussed involve patient data from 40-2000 patient samples.  He focused on novel applications of RNA sequencing for disease biomarker discovery and molecular diagnostics and emphasized the need for platforms allowing for scalability such as cloud computing provided by Amazon Web Services.

The meeting took place at Gordon Biersch in Rockville Town Center, which turned out to be too loud for the discussion but had good beer, of course, on the upside and provided a nice venue for networking.

If you are in the DC area please join us for the next MeetUp on September 24 at the Rockville Library (spaces are limited to the first 50 registrants).  For details visit: http://www.meetup.com/Biomedical-Data-Science/events/202592062/

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