What Is It?
Liberating Data for Health Care Transformation. The Health Data Initiative (HDI) is the movement established in 2010 within HHS operating and staff divisions to make health data openly available, disseminate the data broadly across the health and human services ecosystem, and continuously educate internal and external participants about the value of data. The mission of the initiative is to improve health, health care, and the delivery of human services by harnessing the power of data and fostering a culture of innovative uses of data in public and private sector institutions, communities, research groups and policy making arenas.
Over the past three years, the default setting for data at HHS has changed from closed to open. This has resulted in the launch of an all new HealthData.gov in 2012, the liberation of over 1,000 data sets to date, and more entrepreneurs solving health care problems than ever before. In October, the Health Data Initiative released the first-ever open data strategy and execution plan, which details five data-driven goals for the initiative.
The HDI was launched in 2010 partnership with Institute of Medicine (IOM) and the U.S. Department of Health and Human Services (HHS) after a meeting between leaders from federal agencies, academia, social sectors, public health communities, information technology firms, major businesses, and health care delivery systems. This group formed the Community Health Data Initiative was initially focused on population health and administrative claims data. In 2012, a partnership arrangement with the Institute of Medicine, Robert Wood Johnson Foundation, and multiple other organizations led to the establishment of the Health Data Consortium, a group of influential organizations that encourages innovators to utilize health data to develop applications to raise awareness of health and health system performance and spark community action to improve health. Today, the HDI represents an continuing focus of HHS activities that are a component of the broader health data ecosystem composed of many stakeholders and advocates for the creative use of health and health care data. The data products of the HDI have grown immensely from the first 30 data sets originally hosted on Data.gov, to the growing volume of over 1000 data assets hosted on HealthData.gov and the release of first-ever open data strategy and execution plan, which details five data-driven goals for the initiative .
Why was the health data initiative created?
Data is a broadly valued, highly sought after resource that has demonstrated its value for driving operational efficiency or providing cost reduction insights for multiple domestic and global industries. The HHS Health Data Initiative was developed to harness the power of health data to create additional value for the nation with an ongoing goal of unleashing the power of private-sector innovators and entrepreneurs to utilize HHS data in the creation of applications, products, and services that positively impact health and health care. The idea is to help catalyze the emergence of a decentralized, self-propelled “ecosystem” of innovators across America who leverages HHS data. That ecosystem includes organizations upon which the HDI will rely on for feedback and intelligence that facilitate the democratization of health data and/or advocate for the innovative and responsible use of health data.
Who is this for?
The data resources are available for everyone! HHS has massive quantities of data available for a wide array of uses. Entrepreneurs are looking at the data from new and novel perspectives and using it to fuel their businesses. Technology and development communities are harnessing the data resources to drive the applications, tools and services supporting transformations in health care delivery. Health care professionals are infusing the data’s insights into care delivery decisions. Researchers are accessing the data to support hypotheses and uncover new findings in their respective fields. Community health workers are gaining insights into resources available in their local area to improve the delivery of human services. HHS divisions even use one another’s to support their missions. The data can be used to inform policy decisions, incorporated into educational curricula, and so much more.
Internal Data Stewards
Health Data Leads from across HHS are valuable liaisons in the HDI data liberation process. They are tasked as the main point of contact for data activities in their division such as identifying data sets that are ripe for release, shepherding their promotion to HealthData.gov, and energizing their colleagues to change the culture of the department to one that defaults to openness and transparency.
When can I get involved with the Health Data Initiative?
HealthData.gov provides a 24/7 open door into the department’s health data assets, and an increasingly the data from other public service agencies.
How to Participate
We encourage you to explore HealthData.gov to see the types of datasets that are available. Follow community discussions about how innovators are using health data to reshape health and health care practices. Submit your ideas to the discussion page and attend in person and virtual meet ups with star innovators, public health officials and health care providers to hear where your ideas might play a role.
Remarks from Health Datapalooza 2014
- View remarks from Todd Park, Chief Technology Officer of the United States
- View remarks from Kathleen Sebelius, Secretary, U.S. Department of Health and Human Services
- View remarks from Dr. Francis Collins, Director, National Institutes of Health