The NITRD technical coordination efforts are focused in its Interagency Working Groups (IWGs) where member- and participating-agency representatives exchange information and collaborate on research plans and activities such as testbeds, workshops, and cooperative solicitations.
Since the Data to Knowledge to Action launch in November 2013, partners have been hard at work developing their collaborations and projects that promise to accelerate progress across science, the economy, and society. The following are updates on the projects launched in 2013:
Since its launch last November, the Novartis, Pfizer and Eli Lilly and Company consortium has made important and notable progress in improving access to information about clinical trials. Among their early results, the consortium worked together to update the Application Programming Interface (API) on the Lilly Clinical Open Innovation platform (LCOI-API), allowing sponsors of clinical research studies to upload “target health profiles” for their trials.
A software algorithm has also been developed to match a patient’s individual BlueButton+ health profile to these target health profiles. If there is a possible “match,” the patient is then referred to a more detailed description of the respective trial on www.clinicaltrials.gov, the online registry of clinical trials in the U.S., supported by the United States National Library of Medicine at the National Institutes of Health. With the anticipated proliferation of BlueButton+ health records, this “matching” approach should significantly lower the barrier for patients (as well as their providers and caregivers) to access information about relevant clinical research studies. The overall approach is illustrated in the figure below. A video demonstration of the end-to-end process, showing how an interested person can upload their BlueButton+ profile to an online patient portal, and then search for relevant clinical research studies based on their invidiual health profile, can be viewed at https://sites.google.com/site/p2tconsortium/
In addition, later this year, the project will enter its “public testing phase,” where the consortium will engage with various external stakeholders to help test and evaluate the LCOI-API platform. These stakeholders will be able to either use the API platform to build their own “matching service” or use the existing matching service by providing the consortium with anonymized BlueButton+ profiles of their users. A total of approximately 50 target health profiles will be available for public testing, representing clinical research studies that are recruiting patients in the U.S. across a variety of different disease areas.
July 10, 2014
The Big Data event last November turned out to be a big deal for NoticeandComment.com (N&C), a small business in attendance and leader in disruptive digital solutions for the national public notice and comment system. For N&C, the big-deal was meeting Andras Szakal, the CTO for IBM Federal. Since the Data-to Knowledge-to Action event, a strategic partnership has been developed between N&C and Big Blue.
On Wednesday, June 11, 2014 at the IBM sponsored Federal Summit 2014, several important new IBM offerings were announced including the IBM Softlayer Federal data centers, Federal Softlayer Security Operations Centers, and the BlueMix Platform-as-a-Service (PaaS) Acceleration program. Most notably for N&C, its new partnership with IBM was showcased through the integration of the Mobile Quality Assurance (MQA) BlueMix component into N&C’s featured regulatory mobile app. The mobile app is the first to stream data from, and provide a comment interface with Regulations.gov and the Federal Register.
Technical experts like Jeff Tennenbaum of the IBM Federal CTO team worked closely with the N&C team to quickly integrate MQA components into the mobile app in order to show-off the new features at the Summit. MQA functionality has enabled N&C to monitor and identify application errors and user crash reports, resulting in improved user experience and application stability. The MQA pre-production library features a suite of timesaving development and diagnostic tools that enable direct communication between internal testers and developers.
The MQA integration is the first of many planned N&C innovations utilizing IBM SoftLayer and IBM’s next generation cloud platform BlueMix. Upcoming innovations include scalable enterprise solutions to manage the notice and comment process tailored for municipalities, special district governments, judicial systems, and for corporate and private interests.
N&C is also proud to announce its recent move into the Emerging Technology Center in Baltimore, MD. If you want to learn more, please email us at firstname.lastname@example.org
One major outcome of this workshop is the development of a multidimensional and disciplinary community focused on addressing the information sharing challenges in financial market regulation. This community is unique in that rarely have they come together to think through the challenges that exist with sharing information in the financial market regulation environment. Financial market regulation is a unique field in which sharing information greatly impacts the business process. That being said, openly discussing challenges or successes that regulators and firms have is considered competitive advantage, in some cases, making it less likely for regulators and firms to come together to identify issues. While this type of collaboration is commonly seen in other fields, this workshop presented an opportunity for a community divided to come together to invest their own efforts into changing the environment to enable greater communication and information sharing.
As a result of the Information Sharing and Coordination Challenges (ISCC) in FMR workshop, funded by the National Science Foundation (NSF), four key themes emerged that will be the focus of the research agenda; complexity, trust, incentives and standards. Continued development and refinement of these themes will help outline next steps to support further research and development. The research agenda will focus on the socio-technical interactions between technology and organizational and behavioral dynamics that influence information sharing challenges within financial market regulation. Organization and information sciences have identified conditions favoring and inhibiting the sharing of information and responsibilities in many policy contexts. Many cases in which financial regulatory systems operated effectively through automated as well as personally mediated sharing of information exist. Other cases in which financial regulatory breakdowns stemmed from lapses in the sharing and use of information also exist.
Furthermore, we are working towards the development of briefing or white papers focused on these themes and/or the key research questions. The creation of these briefing papers is expected to continue beyond this project with the goal of generating new knowledge and insight towards information sharing and coordination challenges in FMR.
June 17, 2014
Since announcing our partnerships with Stanford School of Medicine and Germany’s National Center for Tumor Diseases, SAP is pleased to report tremendous progress in our collaborations to advance genomics for improved healthcare and personalized medicine.
1. On May 28, SAP expanded its strategic collaboration with Stanford to research how genetics, environmental exposures, behavior and other factors impact disease susceptibility. A key focus is the implication of global human genome variation in cardiovascular disease.
Stanford researchers have already corroborated a discovery that the genetic risk of Type II Diabetes varies between populations. Using the SAP HANA platform, they queried all relevant genetic variants across hundreds of individuals, in a time and scope of analysis not feasible with traditional methods.
2. To support other studies, SAP has released a beta version of SAP Genomic Analyzer powered by SAP HANA. With access to the 1000 Genomes Project’s phase 1 dataset of 1092 individuals, SAP Genomic Analyzer lets researchers interactively analyze variant data for their specific work. SAP invites interested researchers to participate in this trial with (free) access and support (e-mail:email@example.com).
3. NCT went live in December 2013 with the SAP HANA-based Medical Research Insights Application. Oncologists now use data-driven diagnostics combining clinical, genomic and eventually genomic variant annotation data, to individualize all cancer treatments and match patients to new drug trials. NCT will incorporate “soft” observations from patient recovery at home to help predict outcomes, as they standardize their new model for clinical care.
4. SAP researchers and colleagues have delivered a first draft of the Human Proteome using the SAP HANA database in the cloud. Published in Nature, this 2-year project maps genes to proteins to tissue, revealing the path to genetic expression. Mapping the Human Proteome can trace genetic predispositions to disease and suggest new therapeutic approaches to prevent them.
June 17, 2014
POC: danah boyd (firstname.lastname@example.org)
On March 17, 2014, the Data & Society Research Institute, the White House Office of Science and Technology Policy (OSTP), and New York University’s Information Law Institute co-hosted “The Social, Cultural, and Ethical Dimensions of ‘Big Data.’“ The purpose of the event was to convene key stakeholders and thought leaders from across academia, government, industry, and civil society to examine the social, cultural, and ethical implications of “big data,” with an eye to both the challenges and opportunities presented by the phenomenon.
Central to this event was a deep consideration of the various inequalities that emerge in conjunction with the "big data" phenomenon. In addition to exploring the potential complications of discrimination, we also examined questions about who can and should be holding data practices accountable. Insights from this event, including the materials produced for it, are being fed into the Council on Social, Legal, and Ethical Aspects of Big Data.
To learn more, view the archived documents from the event: http://www.datasociety.net/initiatives/2014-0317/
June 17, 2014
Nov 2013 - Jan 2014
POC: Elizabeth Bruce, Executive Dir, MIT Big Data Initiative (email@example.com)
The MIT Big Data Initiative at CSAIL launched the first MIT Big Data Challenge http://bigdata.csail.mit.edu/challenge on November 12 2013 in partnership with the City of Boston and co-sponsored by Transportation@MIT focusing on transportation in downtown Boston. The challenge made available multiple data sets, including transportation data from more than 2.3 million taxi rides, local events, social media and weather records, with the goal of predicting demand for taxis in downtown Boston and creating visualizations that provide new ways to understand public transportation patterns in the city.
The City of Boston was interested in gaining new insights into how people use all modes of transportation travel in and around the downtown Boston area. A critical imperative of Boston's Complete Streets Policy is to move all modes of transportation more efficiently and to use real-time data to facilitate better trip-planning between modes of transportation. With urban congestion on the rise, city planners are looking for ways to improve transportation such as providing people with more options to get from one place to another (walking, biking, driving, or using public transit) and by reducing and more efficiently routing vehicles in the city.
This Data Challenge provided a unique opportunity to analyze City of Boston taxi data and combine multiple data sets including social media, transit ridership, events data and weather data to effectively predict demand and better understand patterns in taxi ridership. Over $10K in prizes were awarded to the winning student teams.
More than 250 teams entered and submitted work focused on trying to predict demand for taxis and create intuitive visualizations about these topics. Among the questions that teams explored:
At the final event in February 2014, teams presented their work and heard from a panel of judges that included the City of Boston’s director of transportation planning, Vineet Gupta.
“We are excited about this partnership with MIT because it opens up a whole host of opportunities for the city,” said Gupta. “The data analysis that these students have done reflects true out-of-the-box thinking, and has the potential to directly inform future policy decisions in Boston.”
Teams took first prizes for prediction and visualizations, respectively. The prediction winner was "Team Humnet", including students from the Human Mobility and Networks Lab. The visualization winner was CSAIL graduate student Gartheeban Ganeshapillai, who created an interactive map that allows users to see how taxi patterns change over time. He also built a visualization that displays the most common intracity rides. (The winner, with over 10,000 rides, is the trip between Hynes Convention Center and the Cutler Majestic Theatre.)
June 10, 2014
POC: Andrew Hebbeler, White House Office of Science and Technology Policy
At the Data2Knowledge2Actione event in November 2013, John Holdren, President Obama’s Science and Technology Advisor, announced the launch of the White House-led Predict the Next Pandemic Initiative. The goal of the Initiative is to establish a consortium of communities of interest from government departments and agencies at all levels, non-governmental organizations, academic institutions, industry partners, and others to enhance multi-sector collaboration and the use of big data to predict pandemics before they occur. To accomplish these goals, the White House Office of Science and Technology Policy formally chartered a federal interagency Pandemic Prediction and Forecasting Science and Technology (PPFST) Working Group in March 2014, which is co-chaired by OSTP, the Centers for Disease Control and Prevention, and the Department of Defense, and reports to the National Science and Technology Council’s Biological Defense Research and Development Subcommittee.
The PPFST Working Group was charged with developing a pilot project to explore the major drivers of human or animal outbreaks and demonstrate the practical application of information derived from prediction and forecasting models. The Working Group has developed a concept for a pilot project focused on predicting and forecasting dengue outbreaks which will bring to bear the resources, skills, and experience of many agencies, to create infrastructure and strategies for sharing information rapidly, and provide opportunities for important exchanges between the federal government and non-governmental sector. Planning for an inaugural pilot project workshop is underway with the goal of convening experts in summer 2014.
Infectious disease modeling must also take into consideration the impact that social behavior and human movement has on predictions and forecasts. The Pandemic Prediction and Forecasting S&T Working Group will host a one-day workshop to discuss the value of transportation and social/behavior big data sources to enhance infectious disease outbreak prediction, and forecasting. Sessions may include the following topics and will include experts from the federal and non-federal sectors: Human Mobility Data and Infectious Disease Forecasting; Airline Transportation and Global Epidemics; Role of Behavior Data in Infectious Disease Modeling; Human Mobility; and, Social Networking for Infectious Disease Modeling.
June 10, 2014
At the Data to Knowledge to Action event in November 2013, Splunk4Good (the corporate social responsibility program at Splunk) announced that they would develop a public interface that enables users to “explore the federal regulatory data through real time graphs, dashboards, and visualizations.” On June 3, Splunk is launching eRegulations Insights, a site that collects and analyzes data on public comments submitted through Regulations.gov, the portal for Federal rulemaking.
eRegulations Insights includes data-driven visualizations that are specific to different agencies, regulatory proposals, volume of public comment by agency and other factors. Visitors can peruse pre-analyzed data or use the Agency Explorer tool to investigate public comments related to any given agency. Some of the Big Data analytics tools on the site help citizens decipher the tone of public response to regulations and legislative proposals, recognize issues of concern within public responses, and identify primary influencers that are mobilizing public engagement around proposals.
eRegulations Insights currently includes more than 1.1 million public comments gathered from January 1, 2012 onward and is updated daily as new comments are made available. Here are just a few of the interesting insights that the Splunk team found using eRegulations Insights:
June 3, 2014