Liberating data for health care and social services transformation. The Health Data Initiative (HDI) is a 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.
One goal is to harness the power of health data to 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 resources to in the creation of applications, products, and services that positively impact health and health care. In addition the HDI is helping to catalyze the emergence of a decentralized, self-propelled “ecosystem” of innovators across America who leverage HHS data combined with a wide array of data resources. 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.
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 2,000 datasets to date, and more entrepreneurs solving health care problems than ever before. In October 2013, the Health Data Initiative released the first-ever open data strategy and execution plan, which details five data-driven goals for the initiative.
History of HHS Health Data 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 which 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.
The Health Data Initiative has highlighted the need to create engagement opportunities for relevant stakeholders to better access, analyze and derive value from health data.
Here are a few current examples:
Health Datapalooza is a national conference focused on liberating health data, and bringing together the companies, startups, academics, government agencies, and individuals with the newest and most innovative and effective uses of health data to improve patient outcomes. This is a perennial, must-attend meeting for business development, idea sharing, and networking with those in the public and private sectors with creative ideas for innovative uses of health and social services data. Annually HHS makes announcements about unprecedented access to government health and social services resources at the Health Datapalooza.
View videos from the 2015 Health Datapalooza here.
The U.S. Department of Health and Human Services (HHS) has joined OptumLabs, the collaborative health research and innovation center co-founded by Optum and Mayo Clinic, as a research partner. Agencies under HHS’s purview will now have the opportunity to develop and lead innovative health care research using OptumLabs’ big data resources, which link de-identified medical claims and clinical data to provide holistic views of populations and patient care.
OptumLabs, with one of the largest de-identified patient databases in health care, is the first open, collaborative research and innovation center designed to accelerate health care innovation, leading to improved patient care and patient value. More than 100 research projects are currently underway or in development, and members of OptumLabs and its partner organizations have published more than 20 articles in leading health research journals.
The first research project to be conducted through this arrangement is with senior scientists at the Agency for Healthcare Research and Quality (AHRQ) , the lead federal agency charged with improving the safety and quality of America’s health care system. The agency will compare and contrast health care trends identified in its Medical Expenditure Panel Survey (MEPS) with those identified in real-world administrative health care claims records for the commercially insured population in OptumLabs’ databases, with the goal of increasing the value of MEPS to researchers exploring health care costs. MEPS collects data on the health services that Americans use, the cost of these services and how they are paid for.
HHS and its agencies can work with OptumLabs on other projects, including research related to population health and the economics of health care – such as identifying whether disparities exist and can be measured in health care delivery at the national and local levels. All research is performed using de-identified outcomes-based data that can help answer questions about improvements in health care quality and delivery.
HHS Staff: For more specific information on pursuing research projects with OptumLabs, please visit the HHS Yammer Group on this topic, which you can access here. You can also email Bonny Harbinger (Bonny[dot]Harbinger[AT]hhs[dot].gov) for specific questions related to the partnership.
Virtual Research Data Centers
Virtual Research Data Centers (VRDC) are virtual research environments that provide timelier access to data in a more efficient and cost effective manner. VRDCs offer approved researchers doing approved studies that require current data, which needs to be refreshed on a regular basis, a variety of tools to analyze the data.