As discussed in Chapter II, administrative data sources are extensively used by federal and state agencies and, when linked with survey data, add a longitudinal perspective to cross-sectional data. Administrative data also provide more accurate and detailed information about program participation and service use than can be collected via survey. CMS and SSA administrative data linked with large national surveys are particularly likely to be useful for studying a wide range of disability program and policy issues, and important linkages already exist.
There are many additional possibilities for enhancing the use of administrative data. We describe several appealing options below.
1. Maintain and Strengthen Efforts to Link Survey and Administrative Data
As shown in Table II.2, survey and administrative data linkages currently exist for many national surveys,and additional efforts in this area are an important way to address many of the disability data limitations discussed in Chapter II. Examples of administrative files that have been made more widely accessible include the NCHS survey-administrative data linkage efforts, and SSA administrative data linked with the SIPP, made accessible through the SIPP Synthetic Beta data product. An example of a new effort that might be supported would be to develop a match between the ACS data and SSA, Medicare, and Medicaid data. Our understanding is that Census and SSA have already taken steps to test matching procedures. The ACS offers the largest sample sizes of all of the ongoing national surveys, and linkages with administrative data from these major programs would support state and community-level estimates for participation, benefit, health, service, and other measures of interest to researchers and administrators.
Improving the match rates in the survey-administrative data links conducted by NCHS would be another means of strengthening such efforts. OHara (2007) describes a method by which data can be linked to administrative records without the collection of SSNs from respondents. Currently, households selected for the CPS are sent letters informing them that their data may be combined with other data sources, unless they request otherwise. Following the interview, the Census Bureau works with SSA to use information collected on a sample members name, address, and date of birth to obtain a SSN. Using this method, OHara found that 89 percent of all adults had verified SSNs that could be used for matching in the 2006 CPS. For this method to be applicable to other surveys, it requires that a consent process be added to the interview, where respondents consent to providing access to information on their program participation and earnings.
2. Maintain and Strengthen Efforts to Match Administrative Data Across Agencies
Cross-program data linkages would be useful for developing a better understanding of how the target populations of programs overlap and the extent to which service needs are met or are duplicative. Many interagency data use agreements are already in place; developing more of these would expand access to administrative data. There are several examples of existing linkages that provide a template for developing further linkages across agencies. For example, within the next two years, SSA is planning to develop files of Medicare and Medicaid enrollment and claims records that can be linked to SSAs disability data. SSA and RSA have already developed linkable RSA records.
The current agreements we are aware of are all bilateral, though multilateral matches would be valuable in providing information on participation in more than two programs. We understand that SSA, CMS, and the U.S. Department of Education have developed a trilateral agreement but that it has not yet been executed. Its execution, along with SSAs data linking activities, would make it possible for approved researchers in the three agencies and their approved contractors to link Medicare, Medicaid, SSDI, SSI, and RSA records. Qualified SSA employees would also be able to link the IRS earnings records.
Another way to expand such efforts might be to develop a stand-alone data workroom, without personal identifiers, that contains linkable data from numerous program sources: SSA, CMS, earnings data, food stamps, HUD, Temporary Assistance for Needy Families, and perhaps others. This is essentially a component of the vision for the re-engineered SIPP, which has plans to incorporate greater use of administrative data in its design. Attaching selected data from these sources to the SIPP records would be valuable. Allowing restricted-access to a broader set of administrative data would also be useful for many other purposes, including production of basic statistics on the participation of individuals with disabilities in all government programs and longitudinal analysis of individuals as they pass through these programs.
3. Make Greater Use of Unemployment Insurance (UI) Records
Employment and earnings information collected by states for the UI program are reported quarterly and, as such, represent the most frequent and consistently collected administrative data source on employment and earnings. However, states vary in the extent to which they permit researchers or others to use state-level quarterly UI data, and while these data are currently made available to the Federal Government, they may only be used for very specific federal administrative functions. Developing linkages to federal administrative data or survey data and making the UI data accessible for more research purposes would address some of the disability data limitations surrounding the issue of employment.
4. Develop the Capacity to Utilize Electronic Health Records to Address Disability Issues
FAEP members noted that the emerging use of electronic health records might offer future opportunities to use these data on their own or to supplement other data for disability research and policy purposes. Participants acknowledged that use of electronic health records is not feasible at this point in time, but might be a potentially important source of data on disability in the future. It was also noted that, if we expect to be able to use these data for program and policy purposes, work needs to begin now, while the standards and content of electronic health records are still being developed.
Of particular importance is the development of a standard set of items that measure disability and functioning, for use in the identification of people with disabilities in health records. Such measures would also be useful to track changes in disability and functioning over time and in response to particular medical treatments and procedures. Currently, information about disability and functional limitations is not routinely collected in medical records, but as is the case with national survey data, having a basic means to identify people with disabilities is a critical step to being able to use a data source to address disability-related research and policy issues.
SSA is at the forefront of efforts to collect disability data from electronic records. They have established contracts with local health information networks under which they can request the electronic records of applicants for SSDI and SSI benefits, with the approval of the applicant. The availability of electronic records for an applicant reduces the time it takes SSA to collect medical records from months to minutes, and reduces the likelihood that SSA will need to order a consultative examination for the applicant because of missing information. Once SSA has the electronic record, SSA can more readily obtain information from the record than they can from a paper record, and can also store critical information from the record in an electronic record. Currently, only a small share of applicant records are collected electronically, but SSA is pushing to rapidly increase this share. SSA also has plans to develop a repository of electronic medical data on its applicants, to support program management and research.
While there exists an opportunity to shape the future of electronic health records for purposes of disability research, an institution is needed to spearhead and coordinate the effort. The Office of the National Coordinator for Health Information Technology (ONC) is a promising choice given its current involvement in the development of a nationwide health information technology infrastructure. Many of ONCs goals, such as improving the quality of health care and reducing health care costs, can be applied to people with disabilities. Other goals, such as promoting the management of chronic diseases, directly relate to people with disabilities. Further, ONC is currently involved in strategic planning of the health information technology infrastructure and thus, is well positioned to effectively advocate for disability-related improvements to the developing system.
A larger effort by the government to build an electronic health record repository would no doubt be of great value to researchers. SSAs efforts to identify people with disabilities who meet SSDI/SSI medical criteria from such records might provide a good foundation for a broader effort to develop measures of disability and functioning from such records. It is also possible that major health systems with relatively long-standing electronic health record systems (including the Veterans Health Administration) recognize the value of measuring disability and functional status of their enrollees, and are already doing so.
5. Improve General Accessibility
As described in Chapter II, currently there is extensive use of administrative data, and many administrative data sources have been matched to both survey and other administrative data sources. But for a variety of reasons, these data are often technically or legally inaccessible to researchers. TAG and FAEP members suggested that administrative data should be released in a more timely manner and be made more user-friendly. Greater user-friendliness could be achieved through improved documentation, technical assistance, and the creation of variables that are useful for research as opposed to program administration purposes. It was also suggested that administrative data access could be facilitated through the use of a contractor to administer data use agreements (under a model similar to that used by the CMSs Research Data and Assistance Center). To maximize its value, any effort to build a multiagency data workroom would need to be accompanied by a substantial effort to make the data both technically and legally accessible to qualified researchers.