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.

Step-up to be part of the Interoperability Proving Ground

This is a cross-post from the Office of the National Coordinator for Health IT (ONC) Blog, Health IT Buzz. Every day, across the nation, all of us in the health IT community are collectively tackling interoperability challenges. At ONC, we are focused on providing you with the chance to inspire colleagues, share experiences, and describe lessons learned when it comes to interoperability. We believe that doing so will maximize opportunities for collaboration, cooperation, and communication when it comes to: making it easier for patients to be an active member of their care team; enabling health care providers to send, receive, find, and use health information when and where it is needed; and fostering a vibrant and innovative health IT ecosystem. That’s why we are proud to announce the Interoperability Proving Ground (IPG), the first output of our ONC Tech Lab approach. In short, the IPG is an open, community platform where you can share, learn, and be inspired by interoperability projects taking place across the nation. The IPG provides you with a simple way to share a succinct set of basics about your project (e.g., title, description, hyperlink to your project website) and “tag” it with any standards or keywords that may be associated with it (e.g., C-CDA, FHIR, PDMP, ADT). The data you share populate the main IPG home page so anyone can easily filter and search across the entire interoperability project database or view interoperability projects nationwide on an interactive map. No matter how big or how small, every interoperability project you add to the IPG will make a difference and enrich the IPG’s potential for the entire health IT community. The IPG is your chance to showcase your interoperability work nationwide, connect with peers tackling interoperability issues, and make visible progress toward a future where we are all part of a learning health system. To jumpstart the IPG, we’ve already included many of ONC’s interoperability-related projects and will continue to update the IPG on an ongoing basis. We will also coordinate with federal agencies to populate the IPG to represent their experience and interoperability projects. Now, it’s your turn. If you lead an interoperability project, join us and add it to the IPG.

opePutting Engaged and Empowered Individuals at the Center of our Health Care System

At the Department of Health and Human Services (HHS), we are working toward transforming our health care system into one that puts individuals at the center. By making prices and quality information more accessible, providing the right tools to help people navigate the system, and listening to patients, we can help engage and empower people to take control of their health, something that’s good for them and good for our communities. Personally, I have seen first-hand what a difference the right information at the right time can make to someone facing a health care decision, which is why I signed on to help expand this work at HHS. Earlier this month, Secretary Burwell hosted leaders who represent consumers, providers, health insurers, technology companies, and other industry perspectives to share their experiences with putting individuals at the center of the health care system and to help HHS leaders recognize ways we can walk the same path. I wanted to share some of these insights: Making Prices and Quality Information Accessible Transparency and access to information are key drivers of consumer engagement. David Vivero, CEO and Co-Founder of Amino, shared that his company understands the link between individuals’ direct connection to their own health information and increased engagement in health care decision-making. Janice Walker, Co-Founder of OpenNotes, echoed that patients’ access to their health information engages them to be equal partners in their care. Providing the Right Tools and Resources to Help People Navigate the System Dr. Deirdre Mylod, Executive Director of the Institute for Innovation at Press Ganey, emphasized that all players in the health care system must work collectively to remove barriers to engagement. Dr. Sara Laskey, Chief Patient Experience Officer at The MetroHealth System in Cleveland, OH, spoke about how MetroHealth has removed barriers by bringing health care into the community to individuals where they are. The health system started school-based health clinics in partnership with the school district and is seeing significant progress in primary care access resulting in healthier outcomes for the kids accessing care at these clinics. Several participants echoed how community partnership is especially important in the context of serving vulnerable populations and those that may be navigating the health care system for the first time. Listening to the Patient Voice The discussion emphasized the importance of listening to patients and having them at the decision-making table. Mark Ganz, President and CEO of Cambia Health Solutions, spoke about the fundamental shift that listening to patients brought about at his company. Cambia has learned that what patients want is not always what it thinks they want. How the health care sector defines quality and value often differs from how patients define quality and value. Creating a high quality experience involves first listening to individuals and their families and then going from there. Ann Hwang, Director of Community Catalyst’s Center for Consumer Engagement in Health Innovation, elevated the need to incorporate consumers at both the programmatic and policy levels, not just in the doctor’s office. Secretary Burwell closed out the discussion by acknowledging the movement and culture change each of the leaders around the table is effecting, and with a call to action to continue moving the needle forward. In the year ahead, HHS will continue our work to further this vision as we focus on the three areas outlined above. We are already making progress in these areas via a diverse array of initiatives. These include:

  • Enhancing efforts to support the newly insured with tools that help them understand their coverage and connect to care through the Centers for Medicare and Medicaid (CMS) From Coverage to Care program and the Center for Consumer Information and Insurance Oversight (CCIIO) Consumer Support Group, which will continue to provide post-enrollment resources for Navigators and Assisters to support the newly insured post-enrollment.
  • Increasing consumer awareness and access to preventive care by sharing Healthfinder.gov, a free, easy-to-use and interactive tool that provides personalized preventive services recommendations. We’re sharing the Healthfinder.gov application program interface (API) with partner organizations to help more people understand and access preventive services.
  • Helping individuals understand their rights under HIPAA to access and obtain a copy of their health information. In January, the Office of Civil Rights (OCR) released a fact sheet that clarifies individuals’ rights to their health information, including the format in which it is provided to them and access in a timely manner.
  • Continuing implementation of strategies and models that emphasize patient-centered care with the release of CMS’ Person and Family Engagement Strategic Plan in 2016, which will help guide the meaningful and intentional implementation of person and family engagement throughout CMS policies and programs. The CMS Innovation Center (CMMI) continues to develop payment and care delivery models that reward quality, value, and create incentives for providers to improve patient engagement and education.
  • Using open government strategies to empower innovators both inside and outside government to create tools that help solve home and clinical care challenges.

In 2016, we plan to continue our discussion with public and private partners. Together, we can further our shared goal of a better health care system with the consumer at the center. This a crosspost from the HHS.gov blog. Featured image photo credit: https://flic.kr/p/9DVvGY