4. Health Data Leads
Data Liberation
Improved Data Quality
Promote Dataโs Value
External Engagement
Exhibit Uses of Data
Empower and
Engagement
Culture Shift
Policy Development
5. NCVHS Work Group
on Data Access & Use
Rating the Data
Online Community Around Health Data
Identify Events Using Health Data
Strengthening Microdata Use/Protect Privacy
6. Data User Marketplace
Simplify and Democratize
Prizes and Challenges
Identify High Priority, High Impact Issues
Expand Education and Communications
Improve Awareness of Data to Communities
Editor's Notes
The goal of the HDI is to improve health, health care, and the delivery of human services by harnessing the power of data and fostering a culture of innovation in both the public and private sectors. The HDI's efforts are showing how health data may be used responsibly, privately, and securely while supporting health care innovations.In the early days the HDI saw an initial wave of health data openness demonstrated by the first 30 data sets hosted centrally on Data.gov. ย Today the concerted efforts of the Department, led by the Chief Technology Officer's office, have propelled the HealthData.gov platform to a flexible data catalog of over 400 datasets. ย To date, significant effort has gone into making a large volume of data available from various agencies in multiple formats for public consumption and innovation. ย The HDI will focus on data transparency efforts in three strategic areas: ย Strategically focused liberation - Increased emphasis will be placed on liberating data that are deemed to be high value data setsย and/or strategic importance. ย Appropriate Dissemination - Maximize the use of the Healthdata.gov platform to enable greater access to the data and more robust communications about its value. ย Data Education - Education about the data will have both internal and external audiences. ย HDI will accumulate knowledge from departmental colleagues about the data assets we control, and disseminate the knowledge about data as an asset.
The HealthData.gov online platform is the central data access point and communications vehicle for the HDI offering access to, dissemination of, and bi-directional communications about HHS data and other health data. ย The goal for the platform is to be a highly useful, reliable, and well-supported platform for sharing datasets and fostering innovation. The platform is enabled by Application Programming Interfaces (APIs) -- adapters that enable datasets to connect with other systems electronically. ย
The work to achieve this was championed in various HHS agencies by a cadre of Health Data Leads (HDL), individuals tasked with advancing their organizationsโ efforts to support data transparency and the implementation of policies directed at access to and use of federal data sources. Leads act as their agency's data liaison, providing feedback to the CTOโs office on data liberation efforts and issues or challenges they face in their data promulgation activities. ย There are several near- and long-term goals for the HDI which tie to the three aforementioned strategic foci. ย Near-term (6-12 months)Data Liberation Improved data quality Promote Dataโs value External engagement ย Long-Term (2-3 years)Exhibit Uses of Data Empower and Engagement Culture Shift Policy Development
National Committee on Vital and Health Statistics, the Working Group on HHS Data Access and UseThrough the National Committee on Vital and Health Statistics, the Working Group on HHS Data Access and Use assists and advises HHS on recommendations to promote and expand access to and innovative uses and applications of HHS data to improve health and health care. ย The Working Group will assist and advise HHS on recommendations to promote and expand access to and innovative uses and applications of HHS data to improve health and health care. ย ย Areas that the Working Group is focused on include: ย Developing a rating system of health data setsAdvocating for the online community around health data Identifying and participating in events that use health data innovatively Developing and piloting a social media based metric to complement traditional survey and administrative data for communitiesDemonstrating approaches to strengthening uses of microdata while appropriately employing privacy and security safeguards that protect against the mosaic effect (re-identifying individuals based on seemingly disparate unrelated data)
An ongoing goal is to unleash 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. ย 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. ย The HDI will continually seek valuable input from ecosystem contributors for valuable insights into opportunities and challenges in the marketplace. ย To enable and incentivize the marketplace the HDI will: ย Simplify and democratize our materials for broader and clearer understanding of both how to accessย health data, and ideas for what to do with the data. ย ย Utilize prizes and challenges to draw on the ingenuity of the private sector to bring their resources to bear on specific health, heath care, and human services issues. ย Identify specific high priority, high impact issues to be solved in health and health care, then invite the private sector to focus their expertise, creativity, and resources in solving those issues using health data.ย Expand communication and engagement opportunities to individuals and groups that might not normally be associated with healthcare to bring their alternative expertise to the data to spark the development of new and fundamentally different ideas for health care transformation.ย Connect with higher education and efforts to define new economic opportunities and roles for people with analytics backgrounds in health care. ย ย Improve public awareness of the available data specific to their community to drive utilization of health data for local policy development - awareness of environmental issues or social determinants of health can inform policy development.
