Posts

Connecting Data for better insights at the Health Datapalooza

Series of post-it notes

Photo taken during an Office of the CTO brainstorm session

By Bruce Greenstein, HHS Chief Technology Officer and Mona Siddiqui, Chief Data Officer

In 2010, a small group of individuals from HHS and the public sector, tech industry, and healthcare systems gathered with a single question in mind: What data is required to understand and improve health outcomes? How do we share it internally and externally? This first meeting of the public and private sector to identify ways that data can be used to improve health outcomes led to an annual conference called the Health Datapalooza.

The 9th annual Health Datapalooza returns on April 26-27, 2018 in Washington, DC with the same spirit for innovation, bias towards action, and focus on outcomes.

Health Datapalooza is the conference that brings together federal policymakers, health startups, and health system leaders for actionable conversations on how data can be used to improve health and healthcare.

Since, 2010, the HHS Office of the CTO has led the charge for Open Data and has released more than 1,500 data sets on HealthData.Gov. The Open Data movement continues to be a focus of the Department and the Office of the CTO is committed to fostering the use of data for social good. Now, we turn our focus to examining how HHS is using its own data assets to make more evidence-based policy decisions and to develop data-driven solutions for complex problems.

Last year’s HHS Opioid Code-a-Thon, gave our team a look into the many rich data assets at HHS and showed the public and the Department what innovative solutions can be developed when the public and the private sector come together.

We are coming to Health Datapalooza this year looking for ideas: What would you like to see improved on HealthData.gov? How can we meaningfully engage with researchers and entrepreneurs to understand what is needed and important on HealthData.gov? How do we balance data quality with data availability and timeliness at HHS?

Health Datapalooza is the perfect venue to listen to your ideas and share our plans for the future.

As we continue to advocate for Open Data, we are also focusing on how data is used internally at HHS through the Data Insights Initiative. Our vision is an HHS where data are shared, connected, and analyzed in responsible ways to improve how HHS delivers on its mission to enhance and protect the health and well-being of all Americans. We are working with HHS data stewards and open data stakeholders to better understand how we can intelligently use HHS data assets to make evidence-based policy decisions.

Responsible and accountable use of data are topics that are pervasive in our daily discourse. How do other large organizations create responsible, transparent, and accountable processes for data sharing? How can data be connected for real time actionable impact? These are tough but timely issues that require a diverse set of perspectives and a continued commitment from all stakeholders.

Photo of a woman with a flyer

Testing patient education materials with 2017 Health Datapalooza attendees

Along with the HHS CTO, this year at Health Datapalooza you’ll hear from the Secretary of Health and Human Services, the CMS Administrator, FDA Commissioner, the National Coordinator for Health IT and other public and private sector healthcare leaders. Breakout sessions will cover everything from public health surveillance, citizen science and crowdsourcing, machine learning and more.

Whether you are a patient, a provider, or a health data enthusiast, the opportunity to share knowledge across sectors and to see how health data is playing a central role in advancing meaningful solutions is an unparalleled opportunity at the Health Datapalooza. Working alongside startups and industry to solve complex problems is a cornerstone and key principle of the Office of the CTO. We don’t have all the answers, but together we can start to connect data to drive change.

We’re attending the Health Datapalooza in order to collaborate and build partnerships as we search for answers to the above questions. The Office of the CTO is committed to being a leader in promoting the use of data for better decisions and to drive change. We look forward to seeing you there and continuing this conversation.

Editor’s Note: You can register for the Health Datapalooza here. HHS is a sponsor of the conference.

Rapid Opioid Alert & Response – (ROAR), a New Tool to Address the Opioid Epidemic in Local Communities

‘HHS Ignite Team continues their work after the program and scales up ROAR to save lives’

Mitra Ahadpour, MD, DABAM woke up on October 2, 2015 to a headline in The Chicago Tribune that shook her up.

74 overdoses in 72 hours: Laced heroin may be to blame

Ahadpour, a medical officer at the time, now the director of the Division of Pharmacologic Therapies at the Substance Abuse and Mental Health Services Administration (SAMHSA), thought about what she could do to help curb the opioid epidemic that has been sweeping the country.

Ahadpour, along with Gus Lodato, Chandler McClellan and Kaitlin White, also from SAMHSA, applied to the HHS Office of the Chief Technology Officer’s Ignite Accelerator program, which provides selected teams with methodological coaching and technical guidance within a fast-paced, entrepreneurial framework, but first Ahadpour’s team needed an idea to test and iterate within the HHS Ignite program.

It all started with a box of donuts and a chat with a former heroin dealer. Ahadpour knew about an outreach program for heroin and opioid injection drug users that the Baltimore City Health Department was running in December 2015 in West Baltimore. Ahadpour called the Baltimore City Health Department contact she knew and asked if she could come to the outreach program to hang out and listen.

On a cold December day, Ahadpour set out for Lexington Market in West Baltimore to test out her ideas for the HHS Ignite Accelerator Program with injection drug users.

She was a little apprehensive.

“They warned me. They said ‘They may not talk with you. You’re a newbie.’ I brought a box of donuts. I placed the box and stood on the side. They were talking with people, handing out the naloxone kits. One of them came to me and he was a former drug dealer. He said ‘I looked at you and said: Who is this person coming into our territory?’ But then he said, ‘I saw the donuts.’ He eventually gave me his seal of approval,” Ahadpour explained.

The meeting in Lexington Market spurred numerous follow-up conversations, during which she bounced ideas off of the injection drug users, health department staff and first responders from Baltimore. Would they want to know if there was really potent or laced heroin on the street? She asked.

“They said, ‘We care … we don’t want to die,’” she explained.

Ahadpour envisioned a system that would allow SAMHSA to communicate with local health organizations that work with drug users and alert them when there is a spike in overdoses in the area. This spike in overdoses can mean that there is especially potent heroin or that the drugs are being cut with high levels of Fentanyl, which is deadly in high doses. Ahadpour contacted users in the community to find out what they thought about her ideas.

Ahadpour and her team kept plugging away on their ideas and started looking for repositories of real-time data about overdoses in the community. Finally, Ahadpour applied to the HHS Ignite Accelerator boot camp in the spring of 2016 to sharpen the focus.

During the boot camp, she and her team from SAMHSA came up with a prototype. Using drug overdose data from 911 calls and a poison hotline, she worked with SAMHSA staff to set up a program on her laptop that would identify spikes in heroin overdoses in certain areas, which can help public health officials identify tainted heroin in a community.

During the HHS Ignite Accelerator program boot camp, Ahadpour’s team was coached and mentored in human-centered design and entrepreneurial methods. The HHS Ignite Accelerator program helped Ahadpour’s team to use the feedback from the injection drug users, health department staff and first responders in West Baltimore to develop a solution that would meet their needs.

As a result of the HHS Ignite Accelerator program, Ahadpour and her team developed ROAR, Rapid Opioid Alert & Response, an overdose electronic monitoring system that is based on 911 data. Local health departments, after they get an email alert about an overdose spike, can use this information to quickly respond to overdoses in the communities. ROAR also provides the health departments with information for the injection drug user community about addiction resources, including where to get Naloxone, a drug that can help save heroin overdose victims in most cases if administered quickly.

After the HHS Ignite Accelerator Program

The leadership of the Washington-Baltimore High Intensity Drug Trafficking Area (WB HIDTA) got wind of Ahadpour’s project and they liked what they heard.

“It’s really about the data. How can we share data to protect, support and save lives? Our mission is to help local law enforcement. It’s about how we can support them through intelligence. But we’re also the only one [HIDTA] that receives funding for drug treatment, so we find ourselves as a bridge between public health and law enforcement,” said Jeff Beeson, the deputy director at WB HIDTA.

Beeson said that the director of the HIDTA, was interested in the SAMHSA team’s work on ROAR and brought them in to discuss. The WB HIDTA was already in the process of geomapping opioid-related overdoses through their Overdose Detection Mapping Application Program (ODMAP).

The WB HIDTA team had the data and the SAMHSA team had an alert system, so they joined forces to scale up ROAR. As a result of the partnership between the WB HIDTA and the SAMHSA’s team, the ROAR platform is now available on mobile devices through an app. First responders can use the app to report whenever Naloxone is administered. This real time reporting by first responders into the app allows for the public health departments that work with injection drug users to quickly alert their communities that there is tainted heroin in the area. The teams piloted the system for about six weeks earlier this year in Baltimore City, Anne Arundel County, Maryland and two counties in West Virginia. They are now expanding into counties in South Carolina and in Florida, which just passed a bill (HB 249) that authorizes the data collection and specifically mentions ODMAP.

What Beeson and his colleagues have found is that by analyzing the overdose data, patterns emerge.

“We are drawing correlations. If this county has a spike, then we know that this other county is going to have a spike,” Beeson said, adding that Fire and EMS departments are using the data to plan ahead and becoming more proactive in responding to drug overdoses.

Opioid overdoses across the country remain at epidemic proportions, but Ahadpour is hopeful that ROAR, as it is scaled up and modified, can be a helpful tool for patients and providers. Beeson has traveled across the country to discuss ODMAP and ROAR and has more than 200 presentations under his belt, most recently in Ohio and Kentucky. Beeson has 60 teaming agreements signed with counties and municipalities to use ODMAP and ROAR and expects to have the app up and running in an additional 40 counties within six months.

Editor’s Note:  The ODMAP is available for free to States. For more information contact Jeff Beeson at jbeeson@wb.hidta.org. For more information on ROAR, please contact Mitra.Ahadpour@samhsa.hhs.gov.

Help Shape New Directions in Open Science: Vote for Your Favorite Innovation!

a globe of a word cloud related to open science

In the spirit of open science – a movement to make data and other information from scientific research available to everyone — the National Institutes of Health invites you to cast your vote and help us decide which of the projects competing for the Open Science Prize are the most innovative and most likely to have the greatest impact. Your vote plays a critical role in determining the three finalists for the ultimate selection of a grand prize winner of $230,000.00

In this competition, six finalist teams, composed of at least one U.S.-based and one international researcher, are using open data to improve human health. Open data refers to publicly-accessible data that is available for re-use by anyone.

While science is truly a global endeavor, often involving teams of scientists at institutions in different nations, funding for scientific research is typically tied to the country of origin. To overcome this, the National Institutes of Health and the UK-based Wellcome Trust, with additional funding from the Howard Hughes Medical Institute, have jointly created the Open Science Prize, an innovative effort showing how funding agencies can collaborate internationally.

The goal of this Prize is to stimulate the development of novel and ground-breaking tools and platforms to enable the reuse and repurposing of open digital research objects relevant to biomedical or health applications.  A Prize model is necessary to help accelerate the field of open biomedical research beyond what current funding mechanisms can achieve.  We also hope to demonstrate the huge potential value of Open Science approaches, and to generate excitement, momentum and further investment in the field.

The prize was first announced in 2015 and we invited solvers around the world to submit their ideas.  Out of a pool of 96 applicant teams, six finalists were selected and provided $80,000 to develop their ideas into prototypes.

Vote today! You can play a part in shaping the future of biomedical research. To vote, go to www.OpenSciencePrize.org, review the projects listed there (and also described below), and choose the three you would like to see advance to the final round of competition. Voting is open from December 1, 2016 until January 6, 2017 at 11:59 p.m. PST.  The 3 prototypes receiving the highest number of public votes will advance to a final round of review by a panel of science experts and judges from the National Institutes of Health and the Wellcome Trust  A single, grand prize winning team will receive an award of $230,000 jointly funded by the collaborators will be announced in March 2017.

You can learn more about each of the six finalist projects below (listed in no particular order):

Open Neuroimaging Laboratory: Advancing brain research by enabling collaborative annotation, discovery and analysis of brain imaging data

There is a massive volume of brain imaging data available on the internet, capturing different types of information such as brain anatomy, connectivity and function. This data represents an incredible effort of funding, data collection, processing and the goodwill of thousands of participants.  The development of a web-based application called BrainBox enables distributed collaboration around annotation, discovery and analysis of publicly available brain imaging data, generating insight on critical societal challenges such as mental disorders, but also on the structure of our cognition.  Collaborators can send information, make comments, and highlight particular locations on the images, and access can be restricted to allow collaborators to view the images without modifying them – using a functionality similar to Google Docs.

Open AQ: Providing real-time information on poor air quality by combining data from across the globe

Poor air quality is responsible for one out of eight deaths across the world, but the most polluted places in the world are not well-researched, hindering scientific progress. Accessible and timely air quality data is critical to advancing the scientific fight against air pollution and is essential for health research.  The OpenAQ platform collects data every 10 minutes and allows users to view stored data and compare locations.  To date, the OpenAQ community has collected 32,929,735 air quality measurements from 4,569 locations in 41 countries.  Data are aggregated from 55 government level and research-grade sources.

Real-Time Evolutionary Tracking for Pathogen Surveillance and Epidemiological Investigation:  Permitting analysis of emerging epidemics such as Ebola, MERS-CoV and Zika

The Nextstrain project is an app for tracking pathogen evolution in real time, critical in this era of high mobility. Contact tracing is the main way to fight a virus without a vaccine; sequencing the genomes of viruses such as Ebola can determine the shared mutations and phylogeny of each strain, allowing field epidemiologists a more nuanced way to trace contact. To facilitate treatment of active outbreaks of pathogens such as Zika, Nextstrain is able to show molecular epidemiology within days. It also is intended to be scalable and easy to interpret for teams on the ground. The project uses an online visualization platform where the outputs of statistical analyses can be used by public health officials for epidemiological insights within days of samples being taken from patients.

OpenTrialsFDA: Enabling better access to drug approval packages submitted to and made available by the Food and Drug Administration

The OpenTrialsFDA app makes clinical trials data from the U.S. Food and Drug Administration (FDA) easier to find by making the contents of the drug approval packages publically available.  These review packages often contain information on clinical trials that have never been published in academic journals.  OpenTrialsFDA allows users to see the raw results of a study, such as unpublished data or data that seem more significant than they really are, in a way that is much more user-friendly and easier to navigate than the Drugs@FDA database of publicly available documents.

Fruit Fly Brain Observatory: Allowing researchers to better conduct modeling of mental and neurological diseases by connecting data related to the fly brain

Understanding human brain function and disease is arguably the biggest challenge in neuroscience. To help address this challenge, researchers turn to smaller but sufficiently complex brains from other organisms. The Fruit Fly Brain Observatory allows data from fruit fly brain scans to be used as models for investigating human neurological and psychological disorders. The Fruit Fly Brain Observatory also has integrated healthy and diseased models of the human brain for study. Using computational disease models, researchers can make targeted modifications that are difficult to perform in vivo with current genetic techniques. The platform is modular, so it will be extendable to mice, zebrafish, and other experimental animals. These capabilities have the potential to significantly accelerate the development of powerful new ways to predict the effects of pharmaceuticals upon neural circuit functions.

MyGene2: Accelerating Gene Discovery with Radically Open Data Sharing

Approximately 350 million people worldwide and over 30 million Americans have a rare disease. Most of these rare diseases are so-called Mendelian conditions, which means that mutation(s) in a single gene can cause disease.  Examples of such diseases are include sickle-cell anemia, Tay-Sachs disease, cystic fibrosis and xeroderma pigmentosa. Over 7,000 Mendelian conditions have been described, but to date, scientists have only linked half of those conditions to a specific gene. Consequently, close to 70 percent of families who undergo clinical testing lack a diagnosis.  MyGene2 is a website that makes it easy and free for families with Mendelian conditions to share health and genetic information with other families, clinicians and researchers worldwide in order to make a match.

 

International Prize Winners Demonstrate the Future of Open Science

Open Science Winners Infographic-01

The finalists of the first international Open Science Prize competition were announced today.  The Open Science Prize is a collaborative effort between the National Institutes of Health, UK-based Wellcome Trust, and the Howard Hughes Medical Institute designed to encourage and recognize the development of new tools, products, and services that use open digital content to help solve pressing public health and biomedical research challenges.

Six innovative proposals were selected as finalists.  Each of the finalist teams will receive $80,000 for development of a prototype by December 1, 2016.  The six proposals and their associated teams were chosen from an initial pool of 96 submissions representing 450 innovators from 45 countries across 5 continents.  Each proposal selected as a finalist represents an original approach to either synthesizing available data to create new knowledge or creating platforms that allow for the integration of such knowledge.  The six finalist proposals are described in detail on the Open Science Prize website.

The Open Science Prize finalists were announced at the 7th annual Health Datapalooza conference in Washington, DC.  The announcement was made by Phil Bourne, the Associate Director for Data Science at the National Institutes of Health and Clare Matterson, Director of Strategy at the Wellcome Trust.  A grand prize winner, to be selected from amongst the six finalists, will be announced in early 2017.  The grand prize winner will receive $230,000 to advance their winning project.

In order to qualify, each finalist team was required to be an international partnership, composed of at least two or more individuals or entities of which at least one is based in the United States and another is based in another country.  The fascinating stories of how these partnerships formed and what they have proposed provide important and inspiring examples of the power of open science.  These stories demonstrate how open science can enable interdisciplinary teams from across the globe to work together to creatively advance public health and biomedical research.

The following are brief summaries of the six proposals selected as finalists:

  • Open AQ: Real-Time Air Quality Data – This proposal was inspired by an initial open air quality project undertaken in Mongolia, which demonstrated the positive effect that air quality data can have on a community by enabling transparency and the ability to make data-driven comparisons.  Poor air quality is responsible for one out of eight deaths worldwide.  Impressed by the potential benefits of scaling the Mongolia project up to the global scale, the team proposes to devise a platform for making all of the world’s air quality data available to the global public in one open-source and open data platform.
  • Real-Time Evolutionary Tracking for Pathogen Surveillance and Epidemiological Investigation – This proposal stemmed from a conversation at a conference in California between an expert from the Max Planck Institute for Experimental Biology in Germany and an expert from the Fred Hutchinson Research Center in Seattle, Washington. The two proposed to expand their existing platform, focused on exposing flu viruses, to track other emerging diseases such as the Ebola and Zika viruses.  The project will use an online visualization platform where the outputs of statistical analyses can be used by public health officials for epidemiological insights within days of samples being taken from patients.
  • Open Neuroimaging Laboratory – This is a collaborative effort between researchers in the United States, Germany, and France and was inspired by the successful results of an online game, Eyewire, that has led to the discovery of several new neural pathways in the brain.  These researchers asked, “What if we could utilize gaming principles to engage citizens across the world to work collaboratively to help us map a still largely unchartered territory: the human brain?”  Their proposal aims to do exactly that.
  • OpenTrialsFDA – This proposal was inspired by a former FDA reviewer. Publicly available U.S. Food and Drug Administration drug approval packages often contain important information on clinical trials that are never published in academic journals. However, despite their high value, these FDA documents are notoriously difficult to access, aggregate, and search. As a consequence, they are rarely used by clinicians and researchers.  This project proposes to advance understanding of clinical trials by building a platform to make this publicly available, but difficult to find, FDA drug approval package information more readily available and combine it with knowledge being generated about clinical trials by Open Knowledge International, a UK-based organization.
  • Fruit Fly Brain Observatory – This proposal is designed to help pool data from different labs around the world and allow scientists with a variety of backgrounds, from computer science to neuroscience, to work together in advanced modeling.  Using computational disease models, researchers can make targeted modifications that are difficult to perform in vivo with current genetic techniques.  The urgency to develop such a platform comes from one of the lead investigators whose own family is affected by Alzheimer/Dementia and Parkinson’s Disease.
  • MyGene2: Accelerating Gene Discovery with Radically Open Data Sharing– This proposal was inspired by families of patients who suffer from rare disease disorders and want a tool to facilitate their ability to share health and genetic information.  The sharing of information through such an open platform could enable the rapid identification of matching cases, which could help speed up diagnosis and transform the process of gene discovery.

You can learn more about the Open Science Prize, the submitted proposals, and the innovators’ stories here.

The Open Science Prize was a first-ever international challenge effort funded jointly by the NIH and UK-based Wellcome Trust. It highlights the kinds of advancements in global public health and biomedical research that could be developed through further funding of open science.

Biomedical research is in the midst of a paradigm shift. Several factors are facilitating the global sharing of knowledge and the development of international partnerships.  These factors include: advances in information technology, reduced cost of data storage, open government policies being adopted by many countries across the globe, and public access mandates that require the sharing of funded research publications as well as the underlying data.  The existing paradigm of an investigator toiling alone is increasingly being replaced by a more collaborative approach to research that is driven by uses and re-uses of data.

The volume of digital information generated by biomedical research, often referred to as big data, is growing at a rapidly increasing pace. Researchers’ ability to derive knowledge from data is hindered by their ability to find, access, and use it. The goal of the Open Science Prize is to support the development and prototyping of services, tools, and platforms to overcome these hurdles to ensure data can be used to advance discovery and spur innovation.

Tools like the ones we are seeing through the Open Science Prize are enabling new types of research, new types of knowledge, new types of collaboration, and new ways of thinking.  They represent the tip of the iceberg in terms of what is, and what could be created, using open digital content.   We are excited about the power of open science, and look forward to tracking these teams as they build their prototypes over the next nine months.

The public will be invited to view these prototypes in early December and to cast their vote for their favorite using an online tool.  Your vote will help us to select the winning innovation for this contest!

The Open Science Prize is made possible through a collaboration between NIH and the Wellcome Trust. The Howard Hughes Medical Institute is also contributing funds to Wellcome Trust for the effort. The NIH effort is part of the Big Data to Knowledge (BD2K) Initiative, launched in December 2013 as a trans-NIH program with funding from all 27 institutes and centers as well as the NIH Common Fund.

This is a cross-post from Data Science at NIH.

Calling on Data Enthusiasts to Help Advance Cancer Research

data sharing image that asks people to contribute their cancer research ideas to the National Cancer Moonshot Initiative

Warren Kibbe, Ph.D. is the Director of the National Cancer Institute’s (NCI) Center for Biomedical Informatics and Information Technology

Health data enthusiasts of all stripes have arrived in Washington, DC, for an annual event known as Health Datapalooza. Incredibly smart participants from government, academia, companies, startups, and patient groups meet to share ideas and brainstorm about how to share and unleash health information to improve health outcomes for all.

Although the meeting is broader than any single disease, it will explore a topic that is central to NCI’s efforts against cancer: creating knowledge from data. And the institute is reaching out to the data innovation community to help us do just that.

Earlier today, I heard Vice President Joe Biden speaking at Health Datapalooza about the importance of using data to contribute to advances in health. As part of the National Cancer Moonshot Initiative that he is leading, the Vice President has called on the cancer research community to explore new approaches to cancer research, and one repeated message is that data sharing will be critical if we’re going to accelerate progress against cancer.

Cancer is fundamentally a disease of the genome. Increasing amounts of genomic information have been generated in recent years using new tools and improved instruments for analyzing DNA. We know that sharing the results from genomic studies will be essential for translating them into clinical advances for patients.

To that end, NCI supports the National Institutes of Health Genomic Data Sharing policy, which was issued to promote the broad sharing of genomic research results and to ensure oversight and protections for research involving human data. NCI has developed guidanceon the NIH data sharing policy.

In addition, NCI is establishing the Genomic Data Commons (GDC) as a platform for sharing genomic information and associated clinical data broadly with the best scientific minds. The GDC will be an interactive system to store, harmonize, and provide access to data generated by cancer researchers. The Cancer Cloud Pilots Program is another platform we are exploring to enhance access and enable analysis of cloud and genome data for cancer researchers.

From these projects and others, we also have gained insights into many of the challenges of “big data.” Among them is the need for the standardization of results from diverse sources. Another is to establish safeguards to protect patient privacy and to enable secure spaces for working with data. We are making important steps, but the journey is only beginning.

To address these and other challenges, I invite the data innovation community to share their expertise on data sharing and help us accelerate progress against cancer. NCI has provided an online platform, Cancer Research Ideas, to enable the research community and the public to submit ideas for the National Cancer Moonshot efforts.

The submissions we receive will be considered by a panel of scientific experts and patient advocates as it develops the scientific direction for the National Cancer Moonshot Initiative. We welcome your ideas and creativity as we explore new and innovative ways to improve the health of patients with cancer.

Something Big is Happening at Health Datapalooza

As the new hosts of the annual Health Datapalooza, AcademyHealth will welcome the ‘geekerati’ and ‘glitterati’ of the health data liberation movement to D.C. from May 8-11. Although this is the event’s 7th year, it’s our first as host and I couldn’t be more excited!

Health Datapalooza is more than a conference, it’s a homecoming of sorts for the people and organizations who led the charge to open up health data for innovation in the open market and public good; almost immediately it became a must-attend learning event and networking opportunity for those navigating the real world implications of using data to improve health and health care. But if you’re reading this, you probably know that already. What you’re wondering, is “why AcademyHealth?” and, more importantly, “what’s happening this year?”

Let’s start with the first, to provide some context for the second.

AcademyHealth is a national nonprofit, membership organization working with the producers and users of evidence to improve health and the performance of the health system. In addition to our flagship focus on research, we’re the home of the EDM Forum, the Concordium Conference, and many other programs focused on leveraging data and analytics for health system improvements. AcademyHealth has long been a champion for data liberation and a catalyst for its use in decision making and quality improvement.

Transitioning from participants to hosts of the Health Datapalooza, we’ve built on our experience and the expertise of so many contributors and luminaries to shape an agenda that engages all data liberation champions — patients, advocates, technology entrepreneurs, researchers, delivery system reformers, and policy makers — in focused discussions about how we turn data into useful intelligence and evidence. In short, hosting the Health Datapalooza reflects our commitment to ensuring that data and evidence continue to be at the heart of health care and health policy decision-making – and that the researchers, consumers, providers, and other leaders who rely on this evidence base know how to evaluate and use it.

What’s Happening This Year

We’ll continue to celebrate progress on the data access front. However, the focus of the conference has naturally progressed to include a stronger emphasis on working through practical challenges; in short, we have shifted from merely imagining the future to the hard work of creating the future of improved health and care that we envision and sorely need –a future where consumers and patients are essential and active participants at every step of the way.

A Focus on Value Creation

The 2016 themes and tracks were developed with a focus on creating value through data. Track leaders have worked hard to construct an agenda that speaks to a clear set of value propositions.

  • What tools do consumers actually want and need in order to effectively use data? How can we speed the pace of research and innovation using patient-provided data, and do so in a way that mitigates privacy concerns?
  • How are data being used internationally to drive value? What can we learn from others countries about creating businesses, supporting research, and expanding technology development opportunities?
  • In our evolving health data economy of payment and delivery system reforms and technological advancements, how will life sciences adjust to opportunities and challenges of growing data stores, and disparate data sources?
  • As changing populations and dynamic payment models make it more difficult to predict and achieve individual outcomes, how can health care payers use publicly available data to effectively manage and assess risks and align providers and incentivize care delivery while remaining financially viable?
  • Data ingestion, translation and visualization are top priorities for many organizations, yet effective data integration in care delivery is fraught with challenges. How can health care providers and entrepreneurs work together to improve business models for success?

Patients Included

For the first time, Health Datapalooza is a Patients Included accredited event. This means that Health Datapalooza is committed to incorporating the experiences of patients as experts while ensuring they are neither excluded nor exploited. We are following these five Patients Included charter clauses in planning and executing the 2016 Health Datapalooza (see http://healthdatapalooza.org/patients-included/ for more detail):

  • Patients or caregivers with experience relevant to the conference have actively participated in the design and planning of the event.
  • Patients or caregivers will participate in the event’s delivery, and appear in its physical audience.
  • Travel and accommodation expenses for patients or caregivers participating in the advertised program were paid in full, in advance.
  • The disability requirements of participants are accommodated.
  • Access for virtual participants is available.

Continuing Education

To continue to engage and add value for the broad community of health care leaders within the community of health data champions, Health Datapalooza will offer continuing education credits, including

  • AHIMA: Approved for up to 58.0 AHIMA credits.
  • Accounting Professionals: Approved for up to 24.15 NASBE CPE credits.
  • Chief Information Officers: Approved for up to 13.50 CHIME Certified Healthcare CIO (CHCIO) CPE credits.
  • Health IT Certification: Approval for 24.15 Health IT Certification CPE credits.
  • Physicians: Approved for a maximum of 22.25 AMA PRA Category 1 Credits
  • Pending: Health Datapalooza is currently pending approval to offer ACHE.

Prizes, challenges, awards and breaking news

The Health Datapalooza has always been the place for new data releases, development challenges and recognition of the best of the best in the drive to turn data into meaningful tools – and this year is no different. Come for sessions that challenge your assumptions and offer insights that drive value, and stick around for the big news. As Susannah Fox said in her video message, “Big things are guaranteed to happen.”

Learn more and register at HealthDatapalooza.org.

Lisa Simpson is President and CEO of Academy Health

Featured image photo credit:  NIH/NIAMS on Flickr

Health Datapalooza 2016—How Far We’ve Come & Why You Can’t Miss It

Bringing data to life in ways that matter in health and healthcare—that’s the Health Datapalooza!  So register and join us from May 8-11, 2016.  

Founded in 2010, the Health Datapalooza grew from our innovation efforts here, from a very simple belief—if federal government data were made available for innovators to use, new health applications, technology platforms, and services could be created.  At the time, there was little data from federal agencies being made available for use. Today, more than 2,000 datasets from the Department of Health and Human Services (HHS) are fueling an engine of technology innovation.  From the original meeting in March 2010, led by HHS Chief Technology Officer Todd Park, with 45 attendees to test this simple idea about the potential and power of open health data, the Health Datapalooza has grown 7 years later to 3 days of cutting edge innovation among 1800 attendees engaged in policy discussions, and networking among stakeholders and leaders from across industry.

Photos from the first, 2010 Health Datapalooza

Then – the first, Health Datapalooza in 2010 (spot any familiar faces?)

 

The goal of the Health Datapalooza is to promote the growth of a vibrant health data ecosystem that promotes innovative solutions to the critical challenges that exist in health and health care.

The meetup brings fresh ideas and engaging leaders from all corners of government, business, health care, technology and policy, as well as patient and caregiver communities.  Attendees will hear how data transparency fuels innovative applications and business models that are momentum builders on the new frontiers of healthcare.  Health Datapalooza, which is produced by the non-profit organization, Academy Health, and supported by HHS, has the key thought leaders and subject matter expertise to change your perspective from the most engaging consumer applications to widely disruptive primary care business models to the latest news on privacy and security applications.

It’s a recognized, must-attend conference for its diverse audience-base, wide-ranging networking sessions, and new tech demonstration showcases all designed to give you the latest insights into health care innovation.

images from the 2015 Health Datapalooza

Now – Last year’s Health Datapalooza

The 2016 Health Datapalooza:  It’s All About Creating Value from the Data

Once again, Health Datapalooza 2016 brings a high energy level from national and international leaders in engaging discussions, and thought provoking opinions from the C-level of business and government.  More than 35 mini-summit sessions await you to connect with motivating high levels of audience participation and idea-sharing.

The centerpiece theme of this year’s Health Datapalooza is the focus on the value of data and the direct impact it can have on health.  Coupled with revolutionary changes in the health care economy, innovative data applications are in high demand to address high impact health care outcomes and lower cost.  A few highlights of the fresh new content you can expect include:

  • New Challenge Competitions like the Consumer’s Applications Shark Tank (we are still accepting applications!);
  • Sessions on the sharing of cancer clinical care and research data;
  • Three track sessions on international data sharing (including government leadership and entrepreneurs from United Kingdom, Israel, Canada, India, Australia, and France) focused on lowering global barriers to technology innovation in health care.  
  • Exciting announcements including winners of:  the Open Data Science Prize competition, the Health Data Liberator Award, and other competitive data prizes challenging the public to leverage the data to create greater value.
  • All-star lineup of speakers including:  John Doerr (Venture Capitalist, Kleiner, Perkins, Caufield & Byers); Todd Park (Special Advisor to the President); Slyvia Burwell (HHS Secretary); Susannah Fox (CTO, HHS); Jeremy Stoppleman (CEO, Yelp); Deborah DiSanzo (Head of Watson Health, IBM); Andy Slavitt (Acting Administrator of Centers for Medicare and Medicaid Services); Karen DeSalvo (Acting Assistant Secretary for Health) and a host of other inspiring keynotes (as well as a few excellent surprises you won’t want to miss).
  • And as a special bonus, HHS is hosting a full-day public cutting-edge discussion on privacy and cybersecurity issues with federal agency officials to help shape the tech sectors applications development. Learn more here.

By tradition, Health Datapalooza is a highly interactive session that enables participants and subject matter experts to have abundant opportunity for sharing ideas, developing partnerships, and providing government with new perspectives and ideas about the power of open health data. We believe that the 2016 Health Datapalooza will open the doors for intense debate on the cutting edge of data applications that pave the paths of innovation to tomorrow’s health care system.  

We hope you will join us and we encourage anyone with new ideas and aspirations for problem solving to bring their ideas, engage in spirited discussion, and help change health care for the better, for all.

The Invent Health Initiative: The 30 Year Evolution of 3D Print Technology

Photo of a 3D printed protein

3D print of hemagglutinin (HA), one of the proteins found on the surface of influenza virus that enables the virus to infect human cells. Credit: National Institutes of Health, NIAID Flickr 3D Prints

Darrell Hurt, Ph.D., led development of the 3D Print Exchange at the National Institutes of Health (NIH), one of many initiatives sponsored by the IDEA Lab at the U.S. Department of Health and Human Services (HHS). This is the third post in our Invent Health blog series

Because I lived overseas in 1986, I was not among the millions of school children who witnessed the Challenger space shuttle disaster on live TV. But President Reagan’s use of John G. Magee’s poetry to describe how the seven NASA astronauts “slipped the surly bonds of earth to touch the face of God” stirs my emotions, even thirty years later. That year also saw a number of other noteworthy events, many of which would have profound effects on our lives. One particular event in 1986 received little attention because, at the time, we could not conceive the monumental impact it would make in the years that followed.

That year, the U.S. Patent and Trademark Office approved a patent filed by Charles Hull for his “Apparatus for production of three-dimensional objects by stereolithography.” It was the world’s first patent for a device that we now call a 3D printer. It would be another three years before 3D printers became commercially available through Hull’s company, 3D Systems. The technology was first embraced by the manufacturing industry, where the new method of “additive manufacturing” allowed designers to create prototypes rapidly and on site, which eliminated more costly and time-consuming traditional processes such as milling or tool and die making. Despite these advantages, the machines were large, expensive, and developments were driven by specific commercial interests. It would be 25 years after 3D Systems’ first sale before 3D printers began to reach the mainstream consumer market.

Hull’s original patent, and subsequent patents developed by 3D Systems and others, were revolutionary, but the truly exciting developments came decades later, when these patents expired, creating opportunities for others to use the technology and build upon it. When the patent on fused deposition modeling (one of the techniques used in 3D printing) ran out in 2009, efforts by Dr. Adrian Bowyer and his open-source RepRap (Rapid Replicating Platform) initiative led to the modern 3D printing movement.

The explosion of innovation stemming from that movement led to people using 3D printing in ways that Charles Hull never could have dreamed of back in 1986:

  • Thirty years after the Challenger tragedy, NASA is using 3D printing in all sorts of applications to improve the safety and well-being of its astronauts aboard the International Space Station.
  • In February 1986, Pixar Animation studios opened in California; now, they regularly use 3D printing in animation.
  • Microsoft put out its initial public offering on March 14, 1986; less than 30 years later, they entered the 3D printing software market and are spearheading a new file format for computer-assisted design.
  • In April 1986, the nuclear reactor at Chernobyl caused a deadly and toxic environmental disaster; “flying” 3D printers are now being used to clean up radioactive sites.
  • Greg LeMond became the first non-European professional to win the Tour de France in July 1986. This year, Columbian cyclist Nairo Quintana hopes to win the competition in clothing developed with the help of 3D printing.
  • The Statue of Liberty centennial was commemorated in 1986 with numerous replicas and souvenirs; now, 3D printing allows anyone, anywhere, to 3D print their very own replica.

I remember 1986, but like everyone else at the time, I had no idea of the impact that 3D printing and making in general would have on me personally and professionally. As a structural biologist, my research focuses on discovering, through experimental methods, the structures of proteins and using computer-based methods to comprehend those structures. Because structure determines function in molecular biology, understanding the complicated shape of proteins is critical to understanding the molecular mechanisms underlying all life.

Just as Watson and Crick built and benefitted from a physical model of DNA back in 1953, I knew that it would help me both understand and tell others about the much more complicated structures of proteins if only I could hold a model of a biomolecule in my hand. But manufacturing such complex structures is virtually impossible to do with traditional processes.

About eight years ago, I was fortunate enough to have access to a large, state-of-the-art commercial 3D printer, so I started playing around with 3D printing to make models of proteins. Finally, I had highly accurate, physical models of these beautiful and complex molecules. Using them, my research collaborators at NIH and I immediately began to see these structures in a new light. New insights led to new research discoveries and my enthusiasm for 3D printing grew.

Thanks to those expired patents and innovations by makers, hundreds of consumer-level, “desktop” 3D printers are now available, some for as little as $300. I saw how it might be possible for more people to print their own scientific and biomedical models, but there weren’t many designs available online, and they are difficult to createeven for someone with my experience. My team at the National Institute of Allergy and Infectious Diseases, along with collaborators at the National Library of Medicine and the Eunice Kennedy Shriver National Institute for Child Health and Human Development, created the NIH 3D Print Exchange. The Exchange is a website where anyone can download or share biomedical models for free, and we also built custom tools to help people with no experience create their own scientific models.

Since we launched the Exchange, we have done a lot of outreach in the Maker Movement, and the incredible creativity in the community never ceases to amaze me. From people like Dr. Matthew Bramlet, who is creating a library of 3D-printable hearts to help doctors and patients better understand congenital heart disease, to Dr. Jon Schull and the founders and members of the e-NABLE network, who are changing the lives of children and adults with limb differences, there are countless stories of everyday people creating (and sharing!) innovative tools to improve health and quality of life. From what I have witnessed just over the last few years, the potential for 3D printing to revolutionize healthcare, and health research, is immense, and I am eager to see where it takes us.

Finally, I want to recognize the HHS IDEA Lab, for teaching me and my team that approaching challenges with an entrepreneurial spirit can increase the impact of science. The IDEA Lab was instrumental in helping us to, as one of my team members put it, “break all the rules” in creating the NIH 3D Print Exchange. As Dr. Nicole Lurie, Assistant Secretary for Preparedness and Response, so aptly put it in the Invent Health Town Hall held on January 28, it is “a lot easier to get to ‘yes’ if you don’t have to go through ‘no’ first.” If you would like to learn more about our project and experience 3D-printed science firsthand, I invite you to visit us at the USA Science and Engineering Festival. The event takes place at the D.C. Convention Center April 16-17, 2016, and is free to the public. I hope to see you there!

The NIH 3D Print Exchange was developed with funding and support from the HHS Ignite and HHS Ventures Initiatives as well as significant internal support from Office of Cyber Infrastructure and Computational Biology at NIAID. The Project Team received an HHS Innovates Award in 2015, along with the HHS Innovates “Secretary’s Pick.” The Exchange has been featured at various Maker events, including the 2014 White House Maker Faire and the 2015 National Maker Faire.

This was post was co-written with Meghan Coakley, Ph.D., founding member and current project lead for the NIH 3D Print Exchange. If you have questions or comments about the NIH 3D Print Exchange, please direct them to Dr. Coakley at 3dprint [at] nih [dot] gov.

Driving Better Results through Acquisition Innovation labs

People congregating around a table having a meeting and writing on post-it notes During the past two years, through various models, several agencies have focused on improving the acquisition of IT services given the extremely high failure rates, which are consistently plaguing the federal government. While the various approaches to address the critical needs, gaps, and problems associated with IT service acquisitions differ by agency, they’ve all been instrumental in the development of the Office of Management and Budget’s (OMB) memorandum released today—Acquisition Innovation Labs & Pilot for Digital Acquisition Innovation Lab, which should serve as a catalyst for sustainable improvement. The HHS Buyers Club has been front and center since April 2014, dissecting the various problems, developing unique solutions, and collaborating throughout HHS and across the federal government with successful results, lessons learned, and frequent feedback to address and resolve the problems at hand. While our office is housed within the IDEA Lab at the U.S. Department of Health and Human Services (HHS), we educate employees across government about ways their agencies and offices can get involved. We have a number of resources available to help guide those who are interested in learning more about implementing new acquisition strategies, including a series of use cases. These acquisition case studies illustrate how agility and flexibility, communication and collaboration, can produce remarkable strides in government innovation. We are excited to support the White House Office of Management and Budget (OMB) today as they announce a call to action for all government agencies to start their own in-house Buyers Clubs. Together, we can #hackredtape. Below is a cross-post from the White House OMB Blog by Anne Rung, U.S. Chief Acquisition Officer. Fostering a Culture of Innovation Across Government through Acquisition Innovation Labs Summary: Today, we announced a new initiative to accelerate the establishment of Acquisition Innovation Labs in Federal agencies. Since the start of this Administration, the President has taken a number of steps to enable the Government to deliver better results for the American people through the right combination of talent, innovative thinking, and technological tools. As a part of these efforts, today we announced a new initiative to accelerate the establishment of Acquisition Innovation Labs in Federal agencies. These new labs will provide a pathway to test and implement more innovative approaches to acquisitions, with a strong emphasis on improving IT investments. They would also help agencies successfully adopt emerging acquisition best practices to more effectively deliver services to the American people.

As a part of this initiative, agencies are expected to:

  • Appoint acquisition innovation advocates (AIAs) to promote testing of new ideas and better ways of executing existing practices in their agencies through managed risk-taking;
  • Ensure they have innovation labs, or similar mechanisms, to promote meaningful collaboration through an integrated product team; and
  • Participate in a new AIA Council to maximize collaboration across the government, and share best practices and lessons learned.

The acquisition innovation labs, or similar mechanisms, agencies stand up should make IT a focus area, start small and scale over time, be made available for use by the workforce at large, and seek vendor input. Moreover, as a part of this initiative, agencies are encouraged to apply for a new Digital Acquisition Innovation Lab pilot to help accelerate the development of digital acquisition capabilities. This memorandum builds on past successes of establishing innovation labs within the Federal Government. For instance, in 2014, the Department of Health and Human Services’ (HHS) Chief Technology Officer stood up an acquisition innovation lab, and, within months, took advantage of key plays from the Digital Services Playbook and TechFAR Handbook to merge multiple legacy systems into a central web content management system. Similarly, shortly after the Department of Homeland Security’s (DHS) Chief Procurement Officer stood up an acquisition innovation lab, DHS successfully applied a suite of best practices to cut procurement lead time by more than half for a competitively awarded, multi-million dollar contract for critically needed cyber security services for the Einstein project. This initiative also builds on past efforts to drive greater innovation in the Government’s acquisition activities, including:

  • A series of new measures outlined in the White House Strategy for American Innovation, such as the creation of digital service teams across Government to speed the adoption of private-sector best practices for designing, building, and deploying easy-to-use online services and the creation of an “innovation toolkit” to help increase the effectiveness and agility of the government;
  • A number of actions announced in December 2014 to create a more innovative, efficient, and effective acquisition system, including efforts to streamline and strengthen the Government’s procurement process through smart buying practicesresulting in nearly $2 billion in savings to date; and
  • The Digital IT Acquisition Professional (DITAP) Training and Development Program, where select contracting professionals across Government undergo an intensive six-month hands-on training program to learn how to buy IT software and systems development a better way.

The greatest catalyst for innovation is each agency’s willingness to embrace a culture that continuously encourages new ideas and finds better applications of existing practices. Establishing Acquisition Innovation Labs government-wide will play an increasingly important role in empowering and equipping agency employees to implement their promising ideas and foster a culture of innovation that leverages proven government and private sector practices.

Innovation for a Safe and Healthier World: A Scientific Collaboration between CDC and the Georgia Institute for Technology

The Centers for Disease Control and Prevention (CDC) has a mission to create the expertise, information and tools that people and communities need to protect and improve public health. To achieve this mission, we need to understand the massive amounts of data that we collect in order to communicate vital information to keep people safe and healthy. Let’s take flu, for example. It is important for people to know when an outbreak occurs, how to avoid catching the flu, and what to do if you do get sick. Yet, in order to share that information and make specific recommendations about the flu, there are massive amounts of data and research that need to be gathered and analyzed. The advances in our ability to store, retrieve and send large amounts of information during the last decade has resulted in opportunities to manage and use big data to improve public health. These advances are helping us to more quickly identify and control local and global threats. Although CDC does this very well, we saw a need to tap into engineering and high performance computing expertise – that is not common at CDC – in order to build a state-of-the-art capability for managing and using large amounts of data to improve public health. We didn’t have to look far because we found that expertise right in Atlanta, at the Georgia Institute of Technology (GT). We decided to formalize a scientific collaboration that would allow us to work on joint projects that are important to solve challenges at CDC. As an academic partner, GT gives CDC the robust advantage of leveraging the skills and expertise in the combined fields of computing, biology, engineering, science and management. In addition, the proximity of the GT campus to CDC provides the unique opportunity to tap into the undergraduate and graduate student talent in order to build a new and unique future workforce within CDC. Below are a few specific questions we (IDEA Lab) posed about the collaboration:

Is there an overarching mission for the partnership with GT?

The mission is to establish the infrastructure to foster sustainable collaborations and partnerships that yield high public health impact by improving population health on a large scale.

What are the primary objectives?

  • Apply engineering and computing tools and technologies to address emerging public health issues and challenges related to big data.
  • Expose GT students and faculty to the public health framework within CDC.
  • Build a new and unique future workforce at CDC.
  • Provide CDC scientists the opportunity to gain biomedical engineering and bioinformatics knowledge and skills through collaborative projects and activities. 

What are the broad components of the collaboration?

  • Research: Activities will include “quick wins” and longer-term projects.
  • Training: Within the collaborative research activities, GT undergraduate and graduate students will be able to apply their design and technology knowledge to real-life public health challenges. Additional opportunities will be available via the GA Tech Capstone Design program, as well as the more advanced Vertically Integrated Projects (VIP) program. Internship and fellowship opportunities will also be created.
  • Education: Seminars and workshops on topics of mutual interest will be offered to bring together CDC and GT leading experts in specific areas to discuss challenges and potential solutions.
  • Scientific Exchanges: Opportunities will be identified for CDC scientists to spend time at GT and for GT faculty to be at CDC.

Has this been an innovative way of recruiting talent to CDC?

The hope is that the collaboration will attract young talent with skills in engineering and high performance computing to CDC. At this point in the relationship, our greatest success in this area has been to expose students to public health and to demonstrate how their training can be applied to real-world challenges in public health. We see lots of excitement from the students!

What is the single most important aspect to building a successful collaboration with an academic partner?

For us, the most important factor is to have a dedicated person who is the day-to-day contact and can help to facilitate and leverage resources in order to build a sustainable relationship.

What are the biggest challenges you faced while trying to build this initiative and how did you overcome them?

Working with scientists at CDC to get them to resist the tendency to know the answer or outcome they want when working on collaborative projects with GT. By holding back and letting the creative process unfold, we end up with innovative and more cutting-edge solutions that were not initially on our radar. Another challenge was helping faculty and leadership at GT understand the constraints in working with the federal government. Issues such as basic access to data and funding needed to be explained in order to manage expectations and reduce any potential conflicts of interest.

What are the results so far?

Because of the level of enthusiasm and interest to work together, we have been able to develop dozens of student projects led by a CDC subject matter expert and a GT faculty advisor. In addition, we were able to fund several large research projects with GT faculty that are providing solutions that are mission critical to the Agency. We also have held several interesting seminars and workshops on topics that are important to CDC such as bioinformatics; data visualization, and global preparedness and response.

If you had the opportunity, would there be things you would do differently in the design and launch of this program?

The nice part about the design of the collaboration is that we considered the process and activities to be dynamic based on the needs of the Agency. This provides the ability to change priorities and directions as new issues emerge that require an engineering or high performance computing solution.