Announcing a “TOP” Tech Sprint for Health Innovation — Join us!

Photo of digital health apps on a smart phone

The HHS CTO tech sprint will create digital tools and advance data-driven solutions related to health challenges like Lyme disease, experimental therapies, and clinical trials

As part of its innovation efforts around digital health, the Office of the Chief Technology Officer (CTO) announces a new pilot program modeled after The Opportunity Project (TOP) led by the Census Bureau at U.S. Department of Commerce. TOP is a pioneering model for public-private collaboration to tackle complex challenges with data, technology, and agile methods. Teams turn federal open data—datasets and resources freely available and open to the public on Data.gov—into new digital tools. TOP is a design sprint that puts users and people first, while facilitating new collaborations across government, industry, academia, nonprofits, and diverse stakeholders.

The Office of the CTO will lead this 14-week tech sprint as part of its mission to provide leadership and direction for innovation and digital solutions across the Department of Health and Human Services (HHS). HHS CTO will use the TOP methodology to connect tech teams with outside-the-box thinking and collaboration across silos for solutions. The sprint will launch in October 2018 in collaboration with the Presidential Innovation Fellows who are agents of innovation and change within Federal agencies.

Similar to past TOP sprints and demo days, this tech sprint will focus on big problems that demand cross-sector solutions. Tech teams will join a cohort with subject matter experts to tackle one of two health-related challenges:

Challenge #1:

Artificial Intelligence (AI) for approaches for facilitating an experimental therapy ecosystem.

How can we do better by leveraging standards and emerging technologies?

 Team Mission: Create digital tools that help in finding experimental therapies for patients, and vice versa.

The 21st Century Cures Act of 2016 established priorities for initiatives across Federal agencies to reduce roadblocks and enable work toward new therapeutics. One of the chief obstacles to the timely completion of clinical trials is recruitment of participants. To improve the precision of searching for experimental therapeutics, whether they be in clinical trials or under the “Right to Try” Act of 2017, this work proposes testing approaches for structuring eligibility criteria to make it be easier to find relevant experimental therapeutics (and clinical trials, where applicable) without having to a read through a large number of trial protocol texts manually.

Challenge #2:

Harness the power of collaboration, citizen science, and data for Lyme disease.

How can we address Lyme and tick-borne disease through emerging technologies by coupling the power of the crowd and patient insights with data?

 Team Mission: Create digital tools and data sharing capabilities for the prevention, education, and science that will support data-driven decisions and improve public health related to tick-borne disease.

Lyme disease is a tick-borne bacterial infection that affects more than 300,000 patients annually in the United States—more Americans than HIV/AIDS and breast cancer combined. There is no vaccine and an estimated 10-20% of treated Lyme disease patients fail to recover fully. A comprehensive understanding of the full economic and societal cost remains unknown, yet emerging estimates indicate that Lyme disease costs the United States tens of billions of dollars each year. Domestically, it is the fastest-growing vector-borne disease today. In the last 20 years, the number of U.S. counties with Lyme disease has doubled and those considered “high incidence” for Lyme disease have increased by greater than 300% in the northeastern states and by approximately 250% in the north-central states. This growing problem takes a toll on individuals affected, their families, and Federal government programs.

 Innovation often comes from unexpected places. Solutions demand all hands on deck! Join us!

Interested in learning more or being a tech team?

Please email HHS Office of the CTO for more information: cto@hhs.gov
__________________________________________________________________________________________________________________

This blog was written by Kristen Honey, Innovator in Residence, HHS Office of the CTO; Justin Koufopoulos, Presidential Innovation Fellow, GSA; Gil Alterovitz, Presidential Innovation Fellow, GSA

Technology and Community Join Forces to Increase Naloxone Distribution

By the Minus O Team

This is a guest blog post from a team that participated in the HHS Opioid Code-a-Thon.

There’s no denying we’re in the midst of a national crisis that’s affecting every American community regardless of color, income, education, employment status or age. Every day approximately 175 people die of an opioid-related overdose. Every day. Given the incredible damage being ravaged upon our neighborhoods, families, schools and workplaces, the National Opioid Action Coalition (NOAC), and one of its corporate members, Lowekey, have committed to leveraging technology to make a positive impact on this national epidemic. By leveraging the power of mobile technology, the resources of partner and government organizations, and individuals in the community, this team is working to expand the availability of naloxone, the life-saving opioid overdose antidote.

Photo of coders working at the HHS Opioid Code-a-Thon

The Minus O team working at the HHS Opioid Code-a-Thon

What is it?

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. One of those ideas came in the form of our mobile app Minus O.

Minus O is a mobile app that has three main purposes as it relates to the opioid crisis; expanding accessibility and distribution of naloxone, connecting people who may be abusing opioids with treatment resources, and collecting and analyzing data to aid health organizations and first responders in learning more about the epidemic’s impact in specific areas. The app is designed and developed by the team at New York based mobile design firm Lowekey (www.lowekey.com) led by CEO Gregory Lowe II.

“The effect Opioid overdoses have had on my home state of Ohio has been devastating, at Lowekey we felt it was our calling to leverage mobile technology to do something about it,” said Mr. Lowe.

The app, along with support from pharmaceutical and corporate partners, allows lay-persons to register as “responders,” allowing them to receive and carry a free dose of naloxone. Additionally, friends and family members of an individual who may be abusing opioids are able to download the app (anonymously) and use it’s pulsating “SOS” beacon to request assistance from a “responder” should they need naloxone in a rescue situation. Through the app and corporate funding of supply, Minus O creates a “justice league” for opioid overdose victims.

Designing the app

There are two user-scenarios for the app – “responders,” represented with a gradient blue-green color and “requestors,” identified with a gradient red. The color selection is intentional, with the responder colors symbolizing stability and trust and the requestor interface signaling urgency and caution. This color scheme is consistent throughout the app making it easy for users to know what type of action is happening – especially important in a medical emergency situation.

With any design project offering a solution, there are 5 steps that are adopted during development; empathy/understanding the problem, research, wireframes, visual design, and testing. The most important phase in designing Minus O was the research phase where the Lowekey team had to adopt the concept of “user centered design,” keeping in the forefront the user’s state of mind when interacting with this particular app.

The team spent half of the research phase brainstorming concepts, and in the process came to understand the opioid epidemic more deeply. They worked with a fellow NOAC member, Brenda Zane, who provided first-person experience after her son suffered two Fentanyl overdoses and was rescued both times with Narcan. Her “ground level” insights and understanding of the user environment provided the team with actionable steps that could be built into the design.

“We used the Logo as a starting point for the overall look and feel of the app,” said lead designer Alaere Jituboh. We aimed to create a logo that portrayed the help we wanted to offer – more so become a “beacon” of hope in the midst of a devastating crisis. The concept explores symbolism and the psychology of color. The logo is comprised of a simple sans-serif font and a stylized “O” made up of two orange rings and a white dash in the center – orange combines the energy of red and the happiness of yellow, which often is associated with the feeling of encouragement and stimulation, and white being a ray of light and hope.

Connecting to resources

With the initial goal of extending the availability of naloxone accomplished, the team wanted to ensure that users would also have immediate access to treatment and other crisis resources though the app. Lowekey and Zane will be working at a regional level to implement links and access to both state and private resources which will be geo-targeted to the user’s location. This allows those individuals surrounding an overdose victim to actively seek help at the time when it’s most critical – the 24-48 hours post-overdose when opioid users are at higher risk for relapse and additional overdoses.

Piloting the program

In partnership with Ms. Zane and Cole & Weber, a WPP agency in Seattle, the NOAC team and Lowekey are preparing for mid-year (2018) pilot launch in three high-need counties in Washington State. They are in the final stages of securing naloxone funding and distribution and creating a media-backed awareness campaign to expand the program’s footprint and gain widespread adoption. The goal is to reach a 1% saturation rate of responders in these counties in order to collect the necessary and actionable data to further curb the rate of opioid overdose deaths. Once baseline data and results are collected the team will expand the program to other high-need areas across the country.

For additional information please contact:

Gregory Lowe  greg@lowekey.com

Brenda Zane  206.261.8119

HHS Ventures Team Helps Detect Disease Outbreaks


The figure above is not an exotic, tropical flower in bloom, but a transmission cluster of Hepatitis C patients sampled during a single outbreak using GHOST – Global Hepatitis Outbreak Surveillance Tool

Using tech to fight disease is a no brainer

It was a no brainer for the HHS Ventures Fund to include the Centers for Disease Control and Prevention’s (CDC) GHOST project in its latest round of funding.

There are about 3.5 million Americans infected with Hepatitis C (HCV), which attacks the liver and can lead to cirrhosis and other serious health problems, according to the latest data collected by the CDC. This CDC Ventures team is developing a cloud-based, public health research tool to help state and local health departments more quickly detect and fight the spread of disease. The team calls their system GHOST – Global Hepatitis Outbreak Surveillance Technology. Sumathi Ramachandran Ph.D., a CDC scientist who had used an earlier version of the GHOST tool, presented research last year about the CDC’s response to a large, 2015 HCV outbreak among injection drug users, explaining that it contained nearly 400 HCV specimens, of which about 25% were co-infected with HIV. Ramachandran praised the system for its ability to aggregate and present genomic sequencing data and quickly allow interventions.

“GHOST is a game changer,” said Ramachandran, “It integrates new laboratory methods and analytical web-based tools and offers a report which is very end-user friendly.” She explained that GHOST helps scientists visualize the spread of Hepatitis C and begin to identify “super spreaders.”

The CDC’s team pointed to a  “super spreader” they helped to track down. Many in New Hampshire, and around the country, remember the story of a hospital worker who infected dozens with HCV. By reusing a syringe when he stole Fentanyl and replaced it with saline tainted with his blood, a former contract hospital worker who worked all over the United States, infected more than 30 patients with HCV. The culprit’s own genetic biomarker eventually became his downfall. GHOST will help to quickly identify HCV infection as more state and local health departments begin to use the tool.

“It’s an automated, big data, anomaly detector,” said Yuri Khudyakov, Ph.D. Khudyakov;  the project lead, Gilberto Vaughan, Ph.D.; David Campos, Ph.D.; developer Seth Sims; and others at CDC, created the system with the end user in mind, the researchers said.

The GHOST platform identifies transmission clusters of HCV patients and allows states and local labs to access the web-based portal and immediately start to investigate a cluster or outbreak. “State and local labs do not have the resources to do these types of genetic analyses or extract the data in such an easy to understand way” Khudyakov said.

The team from the CDC’s National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention designed and developed GHOST and is now piloting it in five states (Alaska, Michigan, New Hampshire, New York and Tennessee) and has heard from public health officials in Latvia and Georgia interested in the system. The GHOST team will use their Ventures funding to continue to iterate and improve the tool based on the pilot results.

Vaughan said their team is holding training in August for state and local health departments to “show them our protocols” and explain GHOST’s capabilities. Vaughan said they are excited to share the tool with public health officials across the country so they can use its analytic capabilities to identify outbreaks sooner and respond faster.

Ventures History: The HHS Ventures Fund was created in 2013 to stimulate innovative solutions across the Department. The initiative focuses on new ideas and actions that alter and improve the way the Department does business. HHS employees with proven ideas for how to dramatically improve their office, agency, or the Department’s ability to carry out its mission are encouraged to apply. Every year since 2013, after a competitive vetting process, teams are selected to receive growth-stage funding and support to develop and implement their efforts.

HHS Ventures is now in its fourth round. In earlier rounds, HHS Ventures has supported efforts, such as operationalizing an online portal for sharing 3D-printable models related to biomedical science, leveraging algorithms to review medical records and reduce labor of estimating the prevalence of autism in the U.S., and piloting a single sign-on Health Information Exchange system in California for providers.

Editor’s Note: Interested in learning more about GHOST? Contact Vaughan and his team here and read more about the technology in the March 15 edition of The Journal of Infectious Diseases, which put GHOST on its cover.

The Invent Health Initiative: Hardware Innovations for the Low-Resource Environment

A young man holds up a foldable microscope in a remote area.

The stories behind the hardware innovations of health—the bootstrapped, handmade, homemade tools that have helped patients solve challenging home health or clinical care problems—have served as a focal point for our Invent Health Initiative.

These stories extend beyond tools designed for direct use by the patient. What about the health care providers or researchers who are working in low-resource environments and need proper tools to assess the health of their community? In today’s Invent Health blog series post, we’re putting a spotlight on one such example that looked to solve the problem of getting clinicians and scientists who are working in low-resource environments access to a fundamental diagnostic health tool—the microscope.

Health workers in these types of resource constrained environments need accurate diagnostic tools, but often don’t have the means to pay for—or ship—expensive and delicate equipment. Manu Prakash, who runs a bioengineering lab at Stanford University, created a foldable paper microscope that is powerful enough to detect E.coli bacteria yet costs less than a dollar to make. It is not yet available for use, but it represents a possible future for low-cost, easily-distributed scientific tools.

When I traveled to Galveston, Texas last month for a meeting co-hosted by NASA, the U.S. Department of Health and Human Services (HHS), and the University of Texas Medical Branch (UTMB), a convergence of designers, clinicians, architects, engineers, scientists, and other experts, all gathered to talk about one common mission: how to sustain human life in extreme environments. It was clear from our conversations that the overlap in the problems identified—whether health-related or otherwise—in extreme environments (the harsh realities of space, a hurricane-ravaged city, a developing country), found solutions in the ingenuity and outside-the-box thinking of our fellow cross-agency, cross-government, cross-profession, cross-industry colleagues.

When have you found a collaboration between what were initially thought of as incongruous partners been incredibly, and surprisingly successful? Have you ever had to patch together a solution in a low-resource environment? Tell us your story about how you hacked the answer to a question with limited resources and materials.

If you are intrigued by the themes we are exploring, check out the calendar of events associated with the National Week of Making. On Thursday, June 23, HHS IDEA Lab is teaming up with the MedStar Institute for Innovation and the National Institutes for Health to create an interactive exhibition of how the maker movement is affecting health care. If you live in or near Washington, DC, please join us!

Visit our blog post on Medium to leave us your thoughts. Not sure how to leave a response? Read this.

Photo credit: The Next Gen Scientist on Flickr

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.

How Health Datapalooza is Reshaping One Journalist’s View of Health Data

By Charles Ornstein, ProPublica

Charles Ornstein is a senior reporter at ProPublica, a nonprofit news organization in New York. He is the recipient of the 2014 Health Data Liberators award from the Health Datapalooza and serves on the 2016 Health Datapalooza steering committee.


Two years ago, when I attended my first Health Datapalooza, much of the hallway chatter focused on the dearth of data available to help patients and doctors make better health decisions. The Centers for Medicare and Medicaid Services had just started releasing massive data sets, but no one really knew how much data CMS was willing to release or how useful those data sets might really be. Information and tools from private insurers were few and far between.

It’s amazing to think how much things have changed in such a short time: Government agencies (and CMS in particular) have released data sets at a pace faster than I expected, and the discussions are shifting from what data needs to be released to what to do with all this information.

ProPublica, for one, has created and updated tools that let people examine their doctors’ prescribing patterns within Medicare’s drug program (and compare them to others in the same specialty and state), review the services their doctors perform in Medicare (and similarly see it in context) and find the payments the doctors have received from drug and medical device companies.

The Wall Street Journal has a great look-up tool to compare doctors. Others, including Amino, Docspot and Consumers’ Checkbook, have developed tools, too. And data journalist/agitator Fred Trotter has some interesting data projects under way at DocGraph.

To be sure, there’s a lot more information that still needs to be released publicly.

I personally would like to see data on the services delivered in Medicare Advantage (a growing sector of health plans serving Medicare beneficiaries) and state Medicaid programs (which now cover more than 70 million people). Why stop there? It also would be great if the Department of Veterans Affairs and the Department of Defense publicly released detailed data on the health care services they pay for.  And private insurers should play a role too, pooling their data and releasing it publicly with little or no charge.

But while liberating data will always be fun, the new questions data journalists and the broader health data community face are just as pressing, if not moreso. What are the stories that need to be told with this data? Is there such a thing as a good doctor and bad doctor, and can we find the answer in the data? How do we connect all of this information in a way that means something to real people? How much do people care about having data at their fingertips?

I look forward to Datapalooza this year because the discussion, access to newsmakers and hallway conversations will give me new ideas, cause me to question existing ones and make me smarter.

This is a cross-post from AcademyHealth’s blog

Featured image photo credit: jwyg on Flickr

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

The Invent Health Initiative: Hardware Innovations Hard at Work

vegetables and peppercorn seeds scattered on a cutting board

As a part of our invent health blog series, we’re featuring examples of hardware innovations—both new as well as those improving or finding new uses for physical objects that already exist—that have helped enable people to live more independently, in better health, and with greater dignity.

Today we’re featuring examples of assistive devices for cooking and eating.

For example, people with hand tremor are often unable to keep food on a fork or spoon. An inventor created—and tested with the support of a grant from the National Institutes of Health—an assistive device that counteracts the tremor, allowing people living with conditions such as Parkinsons to feed themselves.

Cooking is another challenge that can be overcome for people living with disability. The Amputee Coalition is a nonprofit organization that educates people about how to navigate the kitchen using adapted tools such as spring-loaded scissors, L-shaped knives, and single-handed cutting boards.

 

Share with us: When have you seen examples of hardware innovations improving someone’s ability to cook or eat? Tell us your story if you’ve ever created an assistive device or improved upon existing technology that made someone’s everyday tasks—once an impossibility—now accessible.  

 

Visit our blog post on Medium to leave us your thoughts. Not sure how to leave a response? Read this.

Investing in the Future: New Market-Ready, User-Friendly Health Technology App and Infrastructure Support

This is a cross-post from the Office of the National Coordinator for Health IT (ONC) Blog, Health IT Buzz by Karen B. DeSalvo, M.D., M.P.H., M.Sc., and  Steven Posnack, M.S., M.H.S. / Director, Office of Standards and Technology

As a health care consumer, imagine if you were able to choose a software application (app) to create a secure snapshot of your health information, like pictures that extend over the course of your lifetime. Similarly, imagine as a health care provider if you could find apps uniquely tailored to your specialty or role on the care team and that provide the health information you need in a way that is safe, secure, intuitive, and actionable.

This is the future of health information technology (health IT) we all seek, and the rapid pace of innovation, including the development and use of new standards, continues to demonstrate that these goals are within reach. One major example is the current momentum behind the Health Level 7 – Fast Healthcare Interoperability Resources (FHIR®) standard and a growing interest across the health IT community in open, standardized application programming interfaces (APIs) using FHIR®. These industry-led efforts pave the way for a truly connected healthcare system where consumers and providers can easily and securely access electronic health information and direct it to any desired location.

ONC is committed to investing in this type of community-driven, user-focused innovation. To spur the development of these types of market-ready, user-friendly approaches, today we launched a $625,000 strategic investment to connect and accelerate the industry’s use of FHIR®-based APIs for consumers and providers. This strategy has three goals:

  1. Help Consumers Get and Use their Data. In this first challenge contest, prizes will be awarded to consumer-facing apps that use open, standardized APIs to help consumers aggregate their data in one place that is under their control. Prizes will total up to $175,000.
  1. Improve User-Experience and Utility for Providers. In this second challenge contest, prizes will be awarded to apps that use open, standardized APIs to positively impact providers’ experience with EHRs by making clinical workflows more intuitive, specific to clinical specialty, and actionable. Prizes will total up to $175,000.
  1. Coordinate Open Information About EHR App Solutions. This third coordinated action aims to help providers choose the technology that best fits their needs and workflow. ONC has published a $275,000 funding opportunity announcement that will support the development of an app discovery site that makes it easier for developers to publish their apps and for providers to discover and compare them.

There are a number of ways you can participate in this exciting initiative. Visit Connecting and Accelerating a FHIR App Ecosystem for details on how to apply or participate in these activities.

***

Speaking of FHIR, if you haven’t already, check out the two-day FHIR code-a-thon happening April 1-2, 2016 in Washington DC.  At the code-a-thon, developers from Federal and State-based organizations will have the opportunity to collaborate with entrepreneurs, startups and research organizations to build cool solutions that leverage the HL7 FHIR API.