The mission of the Department of Health and Human Services (HHS) is to enhance the health and well-being of Americans by providing for effective health and human services and by fostering strong, sustained advances in the sciences, underlying medicine, public health, and social services.At the Department, our number one priority will always be to protect the health of all Americans and provide essential human services, especially for those who are least able to help themselves.My role in CTO’s office One of HHS’s biggest asset is information, specifically in the form of data. How is this empowering consumers?Facilitate health innovation and the development of data ecosystemHHS Innovations office has been scanning the environment for the last 24 months, understanding the health data ecosystem26% of adults use mobile phones to access health data (per October 21, 2011), up 12% from 2010Specifically, there was an increase in consumers’ use of mobile phones to manage care or treatment, such as drug refill or medication adherence applications
A national initiative to help consumers and communities get more value out of the nation’s wealth of health data.We want to open up the data and stimulate massive private sector innovation play—this time, with vast amounts of health-related data that are sitting in the vaults of HHS. [This data] has been public in the sense that it’s in books, PDFs, and static webpages, and we’re turning it into forms that developers can actually use The objective is to “[stimulate] innovators to use our data as fuel in applications, products, and services that improve health and healthcare”. The real goal behind the efforts is to “stimulate the emergence of an ecosystem of innovation that sits on top of open health dataOn March 10, 2010, the initiative started with 36 people brainstorming in a room. On June 2, 2010, approximately 325 in-person attendees saw 7 health apps demoed at an historic forum in the theater of Institute of Medicine in Washington, D.C, with another 10 apps packed into an expo in the rotunda outside. All of the apps or services used open government data from the United States Department of Health and Human Services (HHS).In 2012, 242 applications or services that were based upon or use open data were submitted for consideration to third annual “Health Datapalooza. About 70 health app exhibitors made it to the expo. The conference itself had some 1400 registered attendees, not counting press and staff, and was sold out in advance of the event in the cavernous Washington Convention Center in DC.While the process of making health data open and machine-readable is far from done, there has been incontrovertible progress in standing up new application programming interfaces (APIs) that enable entrepreneurs, academic institutions and government itself to retrieve it one demand.
More than half (52%) of Americans say they would use a smart phone or PDA to monitor their health if they were able to access their medical records and download information about their medical condition and treatments. (Manhattan Research, 2011)Approximately 50 million Americans (roughly 20%) have accessed their health information online Mobile phones and devices, with their constant presence, data connectivity, and multiple intrinsic sensors, can support around-the-clock chronic disease prevention and management that is integrated with daily life. These mobile health (mHealth) devices can produce tremendous amounts of location-rich, real-time, high-frequency data.Clinical Trials.gov – Registry of federally and privately supported clinical trials, currently has 134,542 studies with locations in 180 countries
FDA Recall data – food, drug, cosmetic, biologics, animal health products2nd most in-demand data set by data.govOnly available via RSS feed, but we are working to offer API (Aetna is offering API)32 APIs on healthdata.gov with more coming
Locator Data – Elder Care facilities, Head Start locations, Health Care Service Delivery sites & Federally-Funded Health CentersMore Blue Button Data – Claims data from 12 to 36 months for Medicare Part A &B and 12 months Part D New restricted use files available from the Substance Abuse and Mental Health Services Administration for 4-year estimates for the National Survey on Drug Use and Health – most comprehensive mental health and substance abuse survey in the nation
Roughly 95 percent of the potential entrepreneur pool doesn’t know that these vast stores of data exist, so the HHS is working to increase awareness through the Health Data Initiative. Releasing and making open health data useful, however, is about far more than these mHealth apps: It’s about saving lives, improving the quality of care, adding more transparency to a system that needs itFrom our perspective, liberation and liquidity of data is an absolute necessity – specifically, interoperability and integration. The ability to share data amongst many different platforms will be a crucial component. Improved healthdata.gov to make submission of datasets faster and easier for internal data leads
We want innovators to use data as a foundational building block in the development of apps and services that will help consumers take control of their health and health care-iTriage, a rapidly growing mobile and web platform that allows patients to make better informed health decisions, has used HHS health facility locator databases to help consumers find nearby care providers that are right for them. - About to cross 2.3M users - through HRSA clinical center directories-Healthline – 100M visits/month, uses other search engines and narrows search-PatientsLikeMe – will notify you when other clinical trials are available - Patients can share EHRs with each other-Food Oasis – USDA food desert data, beta tested in 7 citiesHRSA/ONC finding: We have found “proof in concept” for the idea that IT can play an important role in improving quality and efficiency of care to the underserved. We also found that in the case of consumer-facing technologies, perceived benefits accrue for the role of technology in facilitating communication and access to human support such as peer-counselors, case managers and nurses.
Direct Relief provides essential material resources — medicines, supplies and equipment — to over 70 countries globally and 1,000 clinics and health centers in the United States.Direct Relief International Dataset contains approximately 50,000 records of shipments made by DRI to agencies world-wide.Health Resources and Services Administration Datasetfocuses on improving access to health care services for people who are uninsured, isolated or medically vulnerable.This dataset contains approximately 700,000 records of service delivery statistics reported by federally qualified health centers.
We want innovators to use data as a foundational building block in the development of apps and services that will help consumers take control of their health and health care
Health Datapalooza is an environment where everyone playing in the open data world can get together and showcase some of the best and groundbreaking innovationsLast Datapalooza we had over 1,600 attendees and over 250 applications featuredNext Datapalooza is June 3 – 4, 2013 @ OmniShoreham in Washington, DC
The transition to target innovation initiatives locally is aligned with the goals of the Department to serve in the grassroots development of the community to improve core public health capacities. Realizing that people want to use health data but may not be content experts, we are connecting our health data content experts with the users. Internal HHS activities:Launch of semi-annual data reviews and brainstorming sessions with each HHS agencyData access improvements made over the past 6 months and planned over the following 6 monthsBrainstorming about how we can connect innovators to each agency’s data to help advance their missionExpansion to include “semi-open” data Tailoring HHS’s health data events to focus on community health or related issues and partnering with public, private and voluntary institutions will jumpstart innovation at the local level and bridge the gap between federal and local governmental efforts. Additionally, HHS has already established “on-the-ground” support in many regions via the HDI Affiliates, local communities or state-based individuals or organizations that serve as a resource to inform, promote, train and/or convene interested parties of the region and connect them with national level health data activities.
26% of Americans use mobile phones for health – Manhattan ResearchHealth social media use has more than tripled since 2007 to over 100 million consumers. – Manhattan Research Remote patient monitoring is expected to grow by 25% per year -- Kalorama
With nearly 12,000 health-related apps available, and more being created every day,It is predicted that the number of mobile app downloads will reach 142 million by 2016, generating billions of real-world data points on patient health experiences and outcomesWithout the development of more sophisticated and effective tools for data visualization and analysis, legitimate questions remain regarding mHealth’s projected impact on chronic disease management and prevention. In considering how the mHealth ecosystem might need to evolve to achieve maximum impact, we can draw lessons from the success of the Internet’s open architecture and its ability to support both open and closed proprietary applications.More data will be liberated, including high value data sets. We will continue to work to improve the already liberated data. More applications will be developed to help consumers, communities and service providers. More opportunities to connect data owners and users will be available. We need your help in growing our data communities nationwide and in connecting data experts with users.
Arnaub chatterjee the innovation data and healthcare ecosystem top-coder roadshow dec 3 2012
The Innovation, Data and Healthcare Ecosystem Arnaub Chatterjee, MHA, MPA Special Assistant to the Chief Technology Officer U.S. Department of Health and Human Services December 3, 2012U.S. Department of Health and Human Services Innovations
HHS Innovations TeamU.S. Department of Health and Human Services Innovations
The Health Data Initiative: turning HHS and our sister agencies into the “NOAA of health data” A Rapidly Growing Array of Innovative Products and Services That: • Help consumers take control of Health-related data from their health and health care • Help employers promote health and wellness • Help care providers deliver better FUELS care • Help journalists shed light • Help local leaders make better- informed decisionsMade available to the public • Support all of the above through “data intermediary” services • And much more U.S. Department of Health and Human Services Innovations
Treasure Troves of DataJust how much information is out there? Consider just a few examples: MedlinePlus Connect has information for over 900 diseases, illnesses, health conditions and wellness issues. This service allows health organizations and health IT providers to link patient portals and electronic health record (EHR) systems to MedlinePlus, an authoritative up-to-date health information resource for patients, families, and health care providers. ClinicalTrials.gov, a registry of federally and privately supported clinical trials, currently has 115,266 trials with locations in 177 countries. The Department of Agriculture’s Myfoodapedia provides information on the total calories and saturated fat content of over 1,000 commonly eaten foods. Data.Medicare.Gov COMPARE APIs provide detailed quality performance data for thousands of individual hospitals, nursing homes, home health agencies, and dialysis providers across the country. U.S. Department of Health and Human Services Innovations
Examples of health data resources that are availableListed below are just some of the key health data sets available that could be utilized in applications/services thathelp care providers, consumers and communities. See pages following for brief summaries of each data set. Andcheck out Health.Data.gov for a much more comprehensive listing of available data resources. If you are building an app/service for…Type of Data Set Providers Consumers CommunityProvider Quality COMPARE APIs at data.medicare.gov Hospital / Nursing Home / Home Health / Dialysis Compare FQHC (Federally Qualified Health Center) Directory National Plan and Provider Enumeration System (NPPES) Downloadable File National Library of Medicine API Portal MedlinePlus Connect Clinicaltrials.gov API NIH’s Visible Human Project NLM’s TOXMAP: Online Toxicology Maps VitalStats Cancer Incidence – Surveillance, Epidemiology, and End Results (SEER) Registries FDA Recalls (drug, food and product) HealthCare.gov Insurance Plan Directory Mental Health Services Directory/Substance Abuse Treatment Center Directory 5 U.S. Department of Health and Human Services Innovations
Examples of health data resources that are available If you are building an app/service for… Data Set Providers Consumers CommunityHousehold Products Database USDA’s MyFood-a-Pedia “Blue Button” data (the ability for veterans, Medicare beneficiaries and active duty military to download their own personal health information)Dietary Supplements Labels Database: brands, ingredients and references Hospital, Skilled Nursing Facility, Home Health Agency, Renal Dialysis Facility, HospiceCost Report Data National Health Expenditures Medicare Claims “Basic Standalone Files” Health Indicators Warehouse QuitNowTxt SMS Library Medical Expenditure Panel Survey (MEPS) Wide-ranging Online Data for Epidemiologic Research (WONDER) Web-based Injury Statistics Query and Reporting System (WISQARS) Your Food Environment Atlas Behavioral Risk Factor Surveillance System (BRFSS) 6 U.S. Department of Health and Human Services Innovations
Where to get the data??Healthdata.gov, the one-stop place to get all of our free, publicly availabledata U.S. Department of Health and Human Services Innovations
How to make data actionable• iTriage• Healthline• Castlight• Patients Like Me• Asthmapolis• Food Oasis U.S. Department of Health and Human Services Innovations
How to make data actionableU.S. Department of Health and Human Services Innovations 9
How Policy and Regulations are Promoting Availability of Data• Health Systems Measurement Project• CMS Data and Information Product Strategy• Medicare Data Sharing• Blue Button U.S. Department of Health and Human Services Innovations
The Third Annual Health Data Initiative Forum – The Health Data Palooza!• Last year’s Palooza took place on June 5-6, 2012 at the Walter E. Washington Convention Center in Washington, DC.• Was hosted through the Health Data Consortium, a public-private partnership between the Institute of Medicine, Robert Wood Johnson Foundation, Consumers Union, Academy Health, Innocentive, Health 2.0, the Mayo Clinic’s Center for Innovation and several other organizations.• Showcased 250 of the best innovations in three tracks: consumer, provider and community apps• Please visit www.hdiforum.org for more information submission and details about each submission category. U.S. Department of Health and Human Services Innovations
Health Data Initiative Current State Health Data Health Data HDI Affiliates Leads Consortium Hackathons / Health Data Healthdata.gov Codeathons Palooza Future State Technologists, Health Data HDI Affiliates social workers, Leads developers, Focused Hackathons / Health Data advocates and Data Codeathons Consortium researchers Liberation Health Data and Palooza Education Healthdata.gov CommunitiesU.S. Department of Health and Human Services Innovations
Between Clinical Encounters• Approximately 50 million Americans (roughly 20%) have accessed their health information online . (Manhattan Research, 2011)• More than half (52%) of Americans say they would use a smart phone or PDA to monitor their health if they were able to access their medical records and download information about their medical condition and treatments. (Manhattan Research, 2011)• 26% of Americans use mobile phones for health. This has more than doubled since the previous year. (Manhattan Research, 2011)• Remote patient monitoring is expected to grow by 25% per year (Kalorama Information, 2011) 15 U.S. Department of Health and Human Services Innovations
Key Next Steps• With the support of the new Health Data Consortium, continued campaign to connect innovators to our data – Challenges and “code-a-thons” -- Innovator “meetups” -- More roving “health data evangelists” -- 2013 Health Data Initiative Forum• Launch of semi-annual data reviews and brainstorming sessions with each HHS agency – Data access improvements made over the past 6 months and planned over the following 6 months -- Brainstorming about how we can connect innovators to each agency’s data to help advance their mission -- Expansion to include “semi-open” data U.S. Department of Health and Human Services Innovations