First Comprehensive HHS Data Sharing Report Released

Today, the Office of the Chief Technology Officer published a comprehensive report of the data sharing environment at the U.S. Department of Health & Human Services (HHS). The report explores the challenges of sharing data between HHS agencies: https://www.hhs.gov/idealab/data-insights/

Led by HHS Chief Data Officer Dr. Mona Siddiqui, a small team of HHS staff interviewed agency leadership and staff from eleven HHS agencies, including at the NIH, CDC, FDA, CMS, and AHRQ, about the challenges and opportunities in sharing data between agencies. This report focuses specifically on data assets identified by the agencies as having high value and that are restricted or nonpublic.

The report is part of an ongoing effort to build and implement an enterprise-wide data strategy at HHS. Creating a data-driven department requires implementing a cohesive data governance structure as well as a platform to encourages data sharing, acknowledge data as an asset, and design policy around evidence

According to the report, HHS lacks a consistent, transparent, and standardized protocol for interagency data sharing. While there are project-by-project successes, there is significant opportunity to develop a framework to efficiently scale. The report also outlines legal, technical, and cultural challenges.

Across the federal government, there is a growing consensus around the value of data governance to minimize costs and maximize efficiency. This report aims to highlight opportunities for improvement so that HHS can become a more data-driven organization. The findings indicate a need for continued engagement across HHS agencies to ensure success in building a cohesive data strategy.

Read the full report here: https://www.hhs.gov/idealab/data-insights/

HHS Data Roundtable: Strategies for combatting the opioid epidemic

By Joel Gurin and Katarina Rebello

The HHS Office of the Chief Technology Officer (CTO) and the the nonprofit Center for Open Data Enterprise (CODE) co-hosted a Roundtable on Data Sharing Policies, Data-Driven Solutions, and the Opioid Crisis in July 2018. CODE has just released its report on this event, which brought together over 70 experts from federal, state, and local government, the private sector, nonprofits, and academia, including winners from the December 2017 HHS Opioid Code-a-Thon.

The Roundtable was an opportunity to focus on health data sharing – a  major priority for HHS – in the context of this pressing national public health emergency. Participants in the Roundtable came up with a number of recommendations that could facilitate data sharing to address the opioid crisis. Some of these recommendations could have broader benefits for health data sharing and data use overall. Recommendations drawn from the Roundtable include:

Photo of participants at the HHS Data Roundtable

Photo of participants at the HHS Data Roundtable taken by Daniel Dominguez

  • Repeal 42 CFR Part 2 and protect substance abuse information under HIPAA requirements. Roundtable participants proposed repealing Title 42 of the Code of Federal Regulations (CFR) Part 2, which limits the use of data related to patients who abuse opioids and other substances, and instead relying on the Health Insurance Portability and Accountability Act (HIPAA) to protect patient privacy.
  • Educate stakeholders on the potential for data sharing under HIPAA. HHS could develop additional resources to help assuage concerns about sharing and utilizing data under HIPAA.
  • Establish standard data usage agreements. Standard Data Usage Agreements (DUAs) would facilitate successful data sharing between and within agencies, enabling more effective application of data to public health crises.
  • Update the Model Vital Statistics Law (MVSL). Modernizing the MVSL would make it easier to link death records with data on opioid overdoses, and would improve interoperability between health records systems at the state and local level.
  • Adopt common data standards. Common data standards could enable policymakers and researchers to integrate data from multiple sources and develop solutions to time-sensitive public health crises like the opioid crisis.
  • Provide controlled access to sensitive public health data. Participants suggested developing a system of controlled access to sensitive public health data to encourage greater collaboration between government, clinical research organizations, and academic institutions in developing data-driven solutions to the opioid crisis.
  • Generate a unique patient identifier for health data. Having a unique identifier for each patient would help practitioners deliver healthcare more effectively, and help researchers and policymakers develop better solutions to public health crises.

On behalf of CODE, it has been a privilege working with the HHS Office of the CTO on addressing this critical public health issue. The results of our Roundtable show how strongly the community of health data experts supports the need for better data sharing. We hope these recommendations are helpful to HHS in developing new data sharing strategies for the opioid crisis and public health overall.

Joel Gurin is President of the Center for Open Data Enterprise, where Katarina Rebello is Director of Programs. The Center thanks its Open Data Partner, PCORI, and its Open Data Supporters, Booz Allen Hamilton and IEEE, for supporting its work on this Roundtable.

 

 

 

 

 

Second KidneyX Listening Session held at the University of Washington

In coordination with the University of Washington, Northwest Kidney Centers, and the U.S. Department of Health and Human Services (HHS), the American Society of Nephrology (ASN) hosted a listening session for KidneyX on Wednesday, August 22 in Seattle, WA.

KidneyX, a public private partnership between ASN and HHS, is a series of prize competitions aimed at accelerating innovation in the prevention, diagnosis, and treatment of kidney diseases.

Sandeep Patel speaks at a podium at the University of Washington Town Hall

Sandeep Patel, KidneyX Program Director, at the University of Washington Town Hall

This listening session is the second KidneyX meeting in which a diverse, multi-stakeholder group was convened to better understand how KidneyX can meet the needs of patients and encourage providers, innovators, and researchers to participate.

Like previous KidneyX meetings, HHS leaders from the Office of the Chief Technology Officer, the National Institutes of Health, the Food and Drug Administration and the Centers for Medicare and Medicaid Services, as well as patients, providers, startups, and the biopharmaceutical and venture capitalist communities participated in the listening session. Participants shared their input on how KidneyX could eliminate barriers to innovation in nephrology.

Broader community feedback is currently being solicited through two recently released Requests for Information (RFI). The first RFI, Requesting Your Feedback on KidneyX, broadly focuses on KidneyX and asks which specific therapeutic areas should KidneyX focus on in future prize competition rounds.

The second RFI, Requesting Your Feedback on the First KidneyX Prize Competition, focuses on the first prize competition (improving kidney replacement therapies for patients) and provides details on how the application, judging and selection process will be run as well as a few general categories for solutions that could be submitted.

All relevant stakeholders, inside and outside the kidney community, are encouraged to view both RFIs and provide comments and feedback by September 14.

To learn more about KidneyX, subscribe to the mailing list and learn how you can provide your input through the RFI process, please visit KidneyX.org.

Help us design KidneyX

By Elizabeth Squire, Communications Director, and Ross Bowling, Operations Research Analyst

KidneyX seeks to improve the lives of the 850 million people currently affected by kidney diseases worldwide by accelerating the development of drugs, devices, biologics and other therapies across the spectrum of kidney care including: Prevention, Diagnostics and Treatment. For KidneyX, HHS has partnered with the American Society for Nephrology (ASN) to use prize competitions to spur innovation in preventing, diagnosing, and treating kidney diseases. As we continue to develop and design KidneyX, we are looking for your input and today we’re happy to announce that we have just published 2 KidneyX Requests for Information (RFIs). One RFI gives some background about the KidneyX project and asks for feedback on how the project can be most effective while the second RFI seeks your input on plans for an upcoming KidneyX prize competition focused on developing alternative therapies for kidney failure.

HHS and ASN’s goal with KidneyX is to improve quality of life for people living with kidney diseases. This means we’re interested in a wide range of potential KidneyX prize competition topics. Possible topics for future prize competitions include (but definitely aren’t limited to):

  • Medications– a variety of treatments for kidney diseases, including drugs and biologics
  • Diagnostics – point-of-care or at-home testing kits, better methods to measure kidney function
  • Patient-centered Tools – electronic health record tools designed to identify and track diseases, applications to empower patients to manage kidney diseases, methods to improve communication within the patient community
  • Next Generation Dialysis – wearable or implantable dialyzers, tissue engineering
  • Prevention –– methods to identify people at risk of kidney diseases and to slow the progression of those with early stage or chronic kidney diseases

The KidneyX team is eager to hear from the people that KidneyX has the potential to impact most: people living with kidney diseases, providers, care partners, innovators, and researchers, to name a few. These RFIs mark the first opportunity for the general public to provide input on KidneyX.

Some opportunities for input include:

  1. What unmet needs – including those related to product development—should KidneyX prize competitions focus on? If you are a person living with a kidney disease, what makes these topic areas particularly important?
  2. What assistance or services might HHS and ASN offer to KidneyX prize winners that would encourage the greatest participation from a broad range of innovators?
  3. In what ways might HHS and ASN, through KidneyX, effectively encourage collaboration or cooperation between participants/prize winners while respecting their intellectual property rights?
  4. Particularly for those interested in participating in a KidneyX prize competition but unfamiliar with kidney functions and diseases, what information would you find it most useful for HHS and ASN to share publicly?

The first prize will focus on developing alternative therapies for kidney failure and will launch on Thursday, October 25, 2018.

To submit your feedback on KidneyX, you can e-mail us at KidneyX@hhs.gov or mail your feedback to KidneyX c/o Ross Bowling, 200 Independence Avenue SW, Room 624D, Washington, D.C., 20201.

We will be accepting and incorporating feedback until September 14, 2018.

Ed Simcox named HHS Chief Technology Officer

Photo of HHS Chief Technology Officer, Ed Simcox

HHS Chief Technology Officer, Ed Simcox

Ed Simcox has been promoted to Chief Technology Officer (CTO) at HHS. Ed had been serving as Acting CTO and was previously the Deputy CTO.  Ed has spent over 18 years working at the intersection of healthcare and technology to create a better healthcare system with the goals of reducing cost and increasing quality and patient satisfaction. Much of his focus has been on health IT and innovative technologies dealing with challenges like EHR usability, interoperability and using innovation to improve healthcare operations.

Learn more about Ed, here. 

Data roundtable brings together state and local leaders at HHS

By Visakh Madathil

Today, in coordination with the Center for Open Data Enterprise (CODE), the HHS Office of the Chief Technology Officer (CTO) convened a roundtable discussion on data sharing policies and data-driven solutions related to the opioid crisis.

The roundtable brought together experts from federal, state, and local government, the private sector, nonprofit organizations, and academia to: (1) Explore possibilities and limits of data sharing, and (2) Define challenges, successes, and proposed solutions for using data to address the opioid crisis.

The roundtable builds off the work of the HHS Opioid Symposium and Code-a-Thon. At the Code-a-Thon over 50 teams from across the country worked with over 70 data sets for 24 hours to develop innovative data and technology solutions to address the opioid crisis. The three winning teams from the Code-a-Thon joined the roundtable to share how their innovative solutions have been implemented since the Code-a-Thon.

The HHS Office of the CTO is committed to fostering the use of data for social good while also advancing the goals of the ReImagine HHS effort to “Get Better Insights from Better Data”.  The Office of the CTO is leading a Department-wide effort to better understand how HHS is using and sharing its own data to make more evidence-based policy decisions. The roundtable served as part of this ongoing effort. Through strategic collaboration, such as this roundtable with CODE, HHS can leverage technology and increased data sharing to solve complex problems.

For more information on the work that the Office of the CTO is doing to break down data silos at HHS visit https://www.hhs.gov/idealab/data-insights/

 

KidneyX Town Hall Held at Mt. Sinai Health System

In coordination with the Mt. Sinai Health System, and the U.S. Department of Health and Human Services (HHS), the American Society of Nephrology (ASN) hosted a town hall for KidneyX on Tuesday, June 26 in New York, NY.

The town hall convened a diverse, multi-stakeholder group to better understand how KidneyX can meet the needs of patients and encourage providers, innovators and researchers to participate in the innovation accelerator’s first prize competition focused on developing alternatives to dialysis. The town hall brought together HHS leaders from the Office of the Chief Technology Officer, the National Institutes of Health, the Food and Drug Administration and the Centers for Medicare and Medicaid Services as well as patients, providers, startups and the biopharmaceutical and venture capitalist communities.

The discussion focused on how KidneyX will aim to accelerate innovation in the prevention, diagnosis and treatment of kidney diseases, partnership ideas and perspectives on barriers and opportunities for participation. Specifically, input was elicited from:

  • Patients about what new developments in kidney products they most want and value;
  • Startups in the kidney space about how KidneyX could best help them move from concept to product in patients’ hands (financial, regulatory, business insights, etc.);
  • Academic institutions about how their research efforts, faculty, students, and trainees can foster the success of KidneyX and potentially partner, as well as interface with patients receiving treatment in their facilities
  • Investors about what guides and influences their investment decisions, specifically in the kidney space

Broader community feedback on the pilot round application criteria, judging process and topics for future KidneyX prize competitions will be solicited this summer through a Request for Innovation.

To learn more about KidneyX and be notified when the comment period opens, please visit KidneyX.org and subscribe to the mailing list.

HHS welcomes nine students from Coding it Forward

Photo of the Nine Coding it Forward Fellows

Coding it Forward Fellows

By: Coding it Forward

On June 4th, Coding it Forward welcomed nine students to the Department of Health and Human Services (HHS) as a part of its one-of-a-kind Civic Digital Fellowship.

The Civic Digital Fellowship is an engineering, product, and design internship program built for students, by students. The nine Fellows assigned to work at HHS are working across a variety of operating divisions, including the Centers for Medicare and Medicaid Services, the National Institutes of Health, and the Health Resources and Services Administration on high-impact technical projects. Students will tackle datasets to detect fraud and help HHS with work around the opioid crisis.

Piloted in 2017 with an inaugural cohort of 14 Fellows at the U.S. Census Bureau, the Civic Digital Fellowship has grown to 36 Fellows across six federal agencies. Its start at HHS can be attributed to former Chief Technology Officer Bruce Greenstein, who had a vision of reimagining how HHS thinks about its digital needs and talent strategy.

Under Greenstein’s leadership, the HHS IDEA Lab, led by Kevin McTigue, has embraced a national effort to attract entrepreneurs and startups to the mission of the Department through HHS Startup Day which has sparked interest from innovation hubs across the country to host Startup Day events of their own bringing together HHS business leaders and the startup community. Internal efforts like the Ignite Accelerator program and the public-private HHS Opioid Code-a-Thon in December have also positioned HHS as an innovation leader in the federal space. This track record is why we are excited to have placed nine high-achieving Fellows at HHS for 10 weeks this summer.

On their first day, HHS’s nine Fellows toured the Hubert Humphrey Building and met with innovation leaders from across the Department, including McTigue, Chief Data Officer Dr. Mona Siddiqui, and Jonathan Sullivan, Deputy Executive Director for the HHS Digital Service, U.S. Digital Service.

“The close support of the HHS IDEA Lab will be a great learning opportunity for Fellows, who bring knowledge of and experience in innovative methodologies including agile development, product management, and design thinking that are common in the private sector,” said Coding it Forward co-founder, Chris Kuang. “The Civic Digital Fellowship also aligns nicely with the ‘Reimagine HHS’ initiative that’s already improving the work that HHS does for the American people, in terms of efficiency, quality, and cost-effectiveness,” said Kuang.

Fellows were welcomed and celebrated on Wednesday, June 6th in a ceremony at the Eisenhower Executive Office Building at the White House, where Coding it Forward co-founders Rachel Dodell, Athena Kan, and Chris Kuang spoke about the program’s history and motivations. U.S. Census Bureau Chief Marketing Officer Jeff Meisel also offered advice to incoming Fellows. Meisel, a former Presidential Innovation Fellow, was the driving force behind the Fellowship’s inaugural cohort.

While the nine students bring skills to HHS that are often in short supply in the federal government, they will have to learn to navigate the unique challenges of government alongside their new teams and supervisors, a group composed mostly of dedicated civil servants. At the end of their summers, Fellows will be experienced “bureaucracy hackers” and technologists exposed to the sheer scale of impact possible in the public sector, a combination Coding it Forward believes will spur them into a life of civic tech and social impact.

In attracting the next generation of technical talent into government, it’s more important than ever to start early, emphasize impact, and create accessible talent pipelines, much like the HHS and the Civic Digital Fellowship are doing this summer. The Fellowship model is fully-funded—offering housing, travel, and a competitive stipend—and boasts a diversity unseen in the tech sector, with students hailing from a wide range of racial, ethnic, academic, and socioeconomic backgrounds.

HHS’s nine Civic Digital Fellows are off to a strong start this summer, in both their own professional journeys and in paving the way for a generation of digital leaders to enter public service.

Meet the HHS Fellows in their own words here or learn more about the program as a whole here. Follow their journeys this summer on Twitter @CodingItForward.

 

Looking Back on a Busy Year as HHS CTO

Photo of HHS Chief Technology Officer, Bruce Greenstein

 

By: Bruce Greenstein, HHS Chief Technology Officer

After over a year proudly serving as Chief Technology Officer at HHS, I have accepted an offer to move back to the private sector.

Working at the intersection of data, innovation, and technology, the Office of the CTO is tasked with improving business processes within the Department. Additionally, we test and validate solutions to solve challenging problems in the delivery of health and human services.

This year HHS Secretary Azar outlined his top priorities, which included combatting the opioid crisis, reducing the cost of healthcare, and ushering in a value-based system. Our initiatives have specifically tackled those priorities.

We recognized that the opioid crisis was in part a data problem. In organizing the HHS Opioid Code-a-Thon, we focused on connecting data to help HHS and local entities gain insight into this complex health challenge. The event attracted teams from corporate heavyweights, students from Harvard and MIT, and small startups across the nation with the mission to create data-driven solutions addressing the opioid epidemic.

We believe healthcare is costly in part because of a lack of innovative, cheaper medical solutions. No group knows this better than chronic kidney disease patients, where dialysis treatment has barely changed in decades. That is why we launched KidneyX, an accelerator that addresses the need for innovation in the treatment, prevention, and diagnosis of chronic kidney disease. KidneyX is a public-private partnership with the American Society of Nephrology that will soon announce an application and encourage innovators to participate. We’re excited to see more entrepreneurs build devices and solutions for a disease that affects millions of Americans. We are thankful for the dedicated health professionals at HHS and ASN who will continue to drive this work until patients with chronic kidney disease see the improvements they deserve.

Photo of Secretary Alex Azar and Bruce Greenstein

Secretary Alex Azar and Bruce Greenstein

The transformation to a value-based healthcare system necessitates better data sharing and analysis to determine the quality of care. At a department as large as HHS, effective data sharing can be challenging. The Enterprise Data Initiative was launched to collect and disseminate data, publishing 1,900 data sets on HealthData.gov to date. Opening data is not enough by itself, which is why the Office of the CTO encourages insightful inter-agency data analysis. We did exactly this between the CDC and CMS, successfully bridging their data divide to produce a robust analysis of infant mortality.

Startup Day at HHS illustrated the value of opening our doors to small teams and entrepreneurs, not just large incumbents. In the Office of the CTO, we believe that attracting more entrepreneurs to focus on federal problems is good for the government. Too many barriers have limited the number of people seeking to innovate in the healthcare space. At Startup Day, early-stage companies gained valuable access to top HHS leadership along with data sets to launch new ventures.

Photo of the Global Digital Health Partnership

Meeting with the Global Digital Health Partnership

HHS is not the only health agency focused on transitioning to value-based care. Other nations have similar initiatives, which is why we helped to found the Global Digital Health Partnership, a consortium of governments from around the world dedicated to sharing digital health practices. As co-chair, I created a framework for how the GDHP as a unified body can demand health technology standards critical to improving healthcare.

In weighing the decision to leave, I had the comfort of knowing that so much has been accomplished in the Office of the CTO. Over the past year, these initiatives–along with the top-notch technology consulting we provide throughout the Department–worked to usher in a culture that believes data sharing, innovative design, and technology are critical to achieving Secretary Azar’s priorities.

Serving this department has been an honor and privilege for which I am incredibly grateful. The people I have met and the team that has supported our efforts have been nothing short of stellar. I’m excited about the next chapter and look forward to bringing innovation to an area of healthcare that is long overdue for change. I wish everyone at HHS continued success on our important mission.

Leveraging the Power of the Crowd in Research and Data Analysis

By Katrina Theisz, Program Analyst, National Cancer Institute, National Institutes of Health

This year at Health Datapalooza 2018, the Department of Health and Human Services (HHS) has put together a panel highlighting the impact of biomedical crowdsourcing on the scientific community. Featuring talks from Jennifer Couch (National Institutes of Health),  Sandeep Patel (HHS IDEA Lab) Stephanie Devaney (National Institutes of Health), Pietro Michelucci (Human Computation Institute), and Matt Biggerstaff (Centers for Disease Control and Prevention), we’ll delve into the different ways engaging the public in scientific research can complement traditional research methods while moving the field forward.

By engaging with people who may not normally participate in scientific endeavors you can gain insight and creative solutions you may not be able to through standard scientific approaches. Citizen Science is an example of a collaborative approach to research involving the public, not just as subjects of or advisors to the research, but as direct collaborators and partners. People know their own lives, their health, their communities, and by working in partnership with them, researchers stand to gain so much. The word partnership is of importance here; that, depending on the project, the questions being asked, and how the study is performed, much of this work starts at the individual or community level.

At its heart, true citizen science is bottom-up, not top-down.Graph that says create, collaborate, connect

Crowdsourcing, on the other hand, tends to start with researchers and filter down, typically in one of two ways: 1. voluntary participation or contributions solicited from unknown individuals (aka “the crowd,” be they experts or not); and 2. opening a line of scientific inquiry to a group of experts (typically achieved through prizes and challenges). People are motivated to help science for a variety of reasons- some because the research may directly impact their lives, others simply because they like science. Sometimes adding a game-like or competitive component to the project is enough to draw people to it.  An added bonus of tapping into the power of the crowd is gaining access to insights you don’t expect. (for example, in Galaxy Zoo, participants sort through satellite imagery to identify different classes of galaxies- side note: by giving participants a forum to share their thoughts and converse with each other, citizen scientists realized they had found an entirely new kind of galaxy.)

But it’s not without its hurdles. Biomedical citizen science and crowdsourcing come packaged with issues that don’t commonly plague other types of projects that engage the public in scientific research. When it comes to sharing personal health data, for instance, there are data privacy and security issues that you won’t find in astronomy citizen science projects. Therefore, trust and transparency are key to the success of any such project, starting at the beginning. It starts with consent- consent that is easy to understand, no law degree needed, no lengthy fine print. What data do the project leaders need? What will it be used for? Who can access it? Addressing those questions clearly up front (and sticking to them) is a great way to avoid issues later. Want to reuse those data later for a different project? Great! Re-consent your participants. Concerned that not everyone in your study is comfortable with the language being used? Consistent iconography can help. We’re an increasingly visual society, and utilizing familiar icons and images can help to clearly convey content without resorting to wordiness.

And then there are the never-ending questions about data quality. How can traditional researchers ensure that donated data are accurate? What kinds of quality control methods work best? Available data suggest that the crowd is as accurate as (and sometimes more accurate than) individual experts, something that has been demonstrated time and time again. Additionally, humans are quite adept at making inferences, visual perception, and abstract thought, which, when paired with computers, can help to train algorithms to recognize certain objects or patterns.

On Friday, April 27th at Health Datapalooza 2018 we will delve into these concepts and much more. For more information on the conference please go to: http://www.academyhealth.org/events/2018-04/2018-health-datapalooza.

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