Introduction and Background
The data collection systems sponsored by HHS are critical to the HHS mission, and they also provide most of the national statistical capacity to monitor the health of the population and the functioning of the health care, public health and human services systems. Many HHS data systems represent the state of the art in their class, but new challenges are placing increasing demands on these resources. New data needs are arising, significant gaps exist, pressures for improved timeliness are mounting, and costs are increasing. At the same time, new administrative data systems needed to support health reform, and the widespread adoption of EHR systems and electronic information exchange can provide a wealth of new data sources. In sum, there is a need to improve survey efficiencies, to address gaps in data for vulnerable populations and to improve the timeliness of data collection and dissemination. All of these improvements must be accomplished in a manner that protects confidentiality.
HHS Data Strategy
The HHS Data Council has completed an assessment of the HHS survey and data collection portfolio and developed a number of strategies and action steps. The actions are designed to strengthen the capacity of HHS data collection resources; promote synergy and reduce duplication; assure efficiencies, quality, utility and timeliness; enhance HHS capacity for quick response data, improve State and local data and data on vulnerable populations, and address departmental data priorities. The Council’s report also outlines a framework for coordination and integration in current data systems as well as opportunities for future integration and alignment of data from surveys, administrative data systems and EHR systems. As indicated below, many of the strategies and actions are already underway and others are planned in the months ahead. The Council also emphasizes that the success of all the strategies and improvements will depend upon HHS’ ability to maintain the core surveys and administrative data systems that comprise the foundation of our data capacity.
High Priority Data Needs
In its review, the Council identified a number of critical data priorities of department wide interest that agencies are endeavoring to address, including data on:
- The impact of the Affordable Care Act (ACA) and other forces affecting health system change on health status outcomes, insurance coverage rates, access and quality indicators, health care expenditures and population health measures.
- The impact of ACA on the behavior of States, health plans, employers, providers, and consumers.
- Health status and health care disparities of vulnerable populations, such as racial and ethnic populations, persons with disabilities, rural populations and LGBT populations.
- State and community level policy and public health data.
- Changes in the adequacy of health care institutions and workforce to meet needs.
- Social determinants of health and the changing nature of population health beyond the health care delivery system.
Goals to improve HHS data collection
In order to meet high priority data needs, the Council identified several goals that would assist the agency in this effort.
- Goal 1: Improve the speed and efficiency of data collection and release.
- Goal 2: Improve access to HHS data.
- Goal 3: Assure the privacy and confidentiality of HHS data.
- Goal 4: Enhance methodology to address policy and population data needs.
- Goal 5: Ensure that survey integration efforts are preserved and expanded.
- Goal 6: Maximize data linkages between HHS data systems to increase analytic capacity and survey efficiency.
- Goal 7: Promote opportunities for integration, standards, and alignment of surveys, administrative data systems and EHRs to meet data needs in a coordinated manner.
Actions and Initiatives Currently Underway
Improving the Speed, Quality, and Efficiency of Data Collection
HHS is taking a number of steps to improve the speed of data collection by maximizing the appropriate use of web surveys, quick turnaround phone surveys, and automating data collection for provider surveys. Examples include:
- ASPE has initiated a new project with NCHS to test the feasibility of developing a web panel for the National Health Interview Survey. NHANES is also exploring the feasibility and utility of a web capability.
- AHRQ and ASPE are testing a quick response telephone survey for faster data collection on special topics using a limited sample in MEPS. AHRQ is conducting a special survey on a small MEPS sample to explore the potential for a web component.
- NCHS has re-designed and integrated its family of hospital, emergency department and outpatient departments into a new National Hospital Care Survey, and is developing plans for a family of long term care surveys and a core survey of long-term care facilities.
- SAMHSA’s emergency room survey is being combined and integrated into the larger family of NCHS provider/facility surveys with interagency collaboration, increasing sample size and response rates, and providing additional data and linkage capability.
- SAMHSA is merging its two national facility surveys, combining sample frames and instruments to streamline data collection, reduce burden, and expand online options.
- ASPE and NCHS are pilot testing the feasibility of extracting clinical data from EHRs for the surveys of health care facilities and providers.
- ASPE has initiated a project with CDC to assess the feasibility of acquiring standardized structured EHR data for public health surveillance reporting programs.
Data Release, Access, and Dissemination
HHS agencies are developing and expanding a number of early data release programs, including NCHS, AHRQ, SAMHSA and CMS initiatives, and working with the Chief Technology Officer.
- Current initiatives include preliminary and advance data release projects such as the NCHS NHIS quarterly early release program and the early release from the MEPS Insurance Component. Other agencies are exploring early release options.
- CMS is creating claims-level public use files (PUFs) that can be made available to users free of charge on the CMS website. CMS is also testing new techniques of data acquisition from States that could reduce administrative costs and level of effort for both federal and State governments, and improve timeliness and reliability of Medicaid data.
- CMS is currently pursuing methods to collect encounter data collected for Medicare beneficiaries in managed care plans.
- NCHS has re-engineered internal processing for birth and death records and is developing a quarterly report for a select group of health indicators to be published within six months of the birth/death event.
- SAMHSA is working on a remote data analysis system for analysts to access variables not available on public use files (State codes) without accessing the restricted-use file.
- All HHS agencies will continue to expand their efforts to provide access to their extensive data resources through outlets such as Data.Gov, HealthData.Gov, and the Health Indicators Warehouse.
Vulnerable and Special Populations and Small Area Data
- HHS has developed data collection standards for race, ethnicity, primary language and other demographic data as outlined in Section 4302 of the Affordable Care Act. The Secretary adopted final data standards on October 28, 2011 and implementation is underway.
- HHS agencies are developing and assessing the potential of model based estimates to provide data for small areas and special populations. Specifically, NCHS is developing and assessing the potential of small area estimation procedures for the NHIS and other NCHS surveys. HHS is working with external groups to improve State and local data.
- LGBT population: NCHS is currently field testing new questions and survey procedures to add measures of sexual orientation on the adult NHIS. HHS is convening listening sessions with the external community on transgender health data needs.
Addressing Emerging Needs
- HHS will promote opportunities for integration, standards and alignment of surveys, administrative data systems and EHRs to meet emerging data needs in a coordinated manner.
- The Data Council has established a Work Group to coordinate plans and activities for adding new questions to HHS and Census surveys to monitor the impact of health reform.
- The Data Council has established a workgroup to review the new administrative data systems associated with ACA implementation to determine where greater alignment in terms of data standards can enhance the potential for ACA monitoring, policy analysis, and evaluation, and will describe how survey data can complement administrative data.
- The Data Council will assess the utility of commercial data sources and nontraditional data sources to answer policy questions and increase HHS analytic capability.
- The Data Council will coordinate a review of agency Research Data Centers with a view toward improvements in access to data while ensuring strict confidentiality protections.
- The HHS Data Council will examine all current data linkage capacities and linked data sets. Plans for new linked data sets will be highlighted.
- HHS has begun a multi-agency effort to assess the current state of monitoring the workforce with existing data and the potential of new standardized data from States, professional groups, and other federal agencies to augment present efforts.