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Purpose. This was a Data Capacity-Building Project, to build a robust comparative effectiveness research infrastructure, agenda, and collaborative partnerships focused on eliminating health disparities. Specifically, a database was built comprised of all Medicaid enrollees and claims in the states that share in common both adverse minority health outcomes and the historical roots of racial health disparities in the South.

Setting and Participants. A 100 percent sample of four years 2004-2007 of Medicaid Analytic Extract (MAX-file) data (plus Medicare-linked claims for dual-eligibles) from fourteen southern states, representing 3.8 to 5.4 million persons each year (one-third of all United States Medicaid enrollees, nearly half [48 percent] of African American and 21 percent of Latino Medicaid enrollees in the United States) was obtained from the Centers for Medicare and Medicaid Services (CMS). This region is the epicenter of the Black-White health disparities epidemic, and has also experienced a recent and rapid influx of Latino immigrants. This project provided support for personnel and infrastructure needed to efficiently organize and analyze these data to support minority investigators. The HBCU-based team had extensive previous experience training health services researchers (especially minority investigators) to use Medicaid claims data for research.

Specific Aims: Using Medicaid Claims Data

1. To build a Medicaid claims dataset (including socieconomic, contextual, and geospatial analytic variables, NDC cross-walk data and therapeutic class codes, as well as certain Medicare data for dual-eligibles) to support projects focused on the intersection between disparities research and comparative effectiveness research in clinically and socially complex patient populations.

2. To create an efficient process for assisting non-Morehouse investigators to develop research protocols, analysis plans, CMS data re-use requests, and analytic files for collaborative research.

3. To train, develop, cultivate, and support emerging minority investigators (especially at Historically Black colleges and universities (HBCUs) and other minority-serving institutions) as independently-funded health services researchers who are increasingly proficient in multivariate analysis of Medicaid and Medicare claims data.

4. Cultivate comparative effectiveness and disparities research collaborations with Georgia Tech experts in mathematics, complexity science, simulation modeling, and interactive computing.

Relevance. Medicaid patients are characterized by clinical and social complexity -- the very characteristics which often exclude them from clinical trials and yet drive health disparities. This Medicaid-based dataset populates studies that help users understand how local area, provider-level, and patient-level differences in treatment (natural experiments in comparative effectiveness) influence clinical and economic outcomes. Variation implies that disparities are not inevitable. The comparative impact of this natural variation can be measured in meaningful outcomes such as emergency department visits, hospital admissions, inpatient bed-days, deaths, and total Medicaid expenditures, as well as community-level disparity rate-ratios. Medicaid data allow users to follow a complex patient (e.g., comorbid diabetes and schizophrenia or COPD and CHF) from treatment to outcomes through every billable service in the health care system (i.e., from doctor's visit to lab tests to prescriptions to emergency room visits or hospital admissions). Morehouse School of Medicine has a unique ability to develop a new cadre of minority investigators to conduct and interpret the results of health services research with a racially sensitive, culturally competent perspective.

Data Overview. The Centers for Medicare and Medicaid Services produces the MAX-files from Medicaid Statistical Information System (MSIS) data submitted by each state, with some data cleaning and validation by CMS sub-contractors before data are released to researchers.

The MAX-file data from CMS were loaded onto encrypted, secure servers at Morehouse School of Medicine. Research analytic files were created for each sub-project, including sickle cell disease, diabetes and schizophrenia; asthma; dementia; and congestive heart failure. For specific sub-projects, contextual variables from census data or area resource file were linked by county FIPS code.

Data Access. The data cannot be made publicly available. Data are stored on Morehouse School of Medicine encrypted servers, and may be used only for projects covered within the aims of the original research protocol and Centers for Medicare and Medicaid Services (CMS)-approved data use agreement. Data sharing is allowed only for research protocols approved under data re-use requests by the CMS privacy board. The CMS process for data re-use requests is described at the ResDAC Web site.

Due to limitations of research staff within the Morehouse National Center for Primary Care, and limitations of the existing CMS data use agreement, only re-use requests consistent with the original aims of the approved research protocol are considered (temporal and geographic variation in racial-ethnic disparities in quality, access and outcomes for Medicaid enrollees in 14 southern states). Specific aims of the current research protocol define the boundaries of what kind of research questions could be answered or sub-projects developed within the existing research protocol and data use agreement (see above "Specific Aims" section). A worksheet for developing an analysis plan for a specific research question is attached. Parties interested in the data should contact George Rust, MD, MPH ([email protected]).

Six SAS program syntax files used for data analysis, however, are available on the ICPSR site.

Aside from data re-use requests, the Morehouse National Center for Primary Care is open to collaborations which address these research aims and are consistent with their health equity research priorities, in which analyses could be performed by the Morehouse National Center for Primary Care research team and papers authored or co-authored by faculty from other minority-serving institutions or affiliated with the Research Centers in Minority Institutions (RCMI) Translational Research Network (RTRN).

The Longitudinal Study of American Youth (LSAY) is a project that was funded by the National Science Foundation in 1985 and was designed to examine the development of: (1) student attitudes toward and achievement in science, (2) student attitudes toward and achievement in mathematics, and (3) student interest in and plans for a career in science, mathematics, or engineering, during middle school, high school, and the first four years post-high school. The relative influence parents, home, teachers, school, peers, media, and selected informal learning experiences had on these developmental patterns was considered as well.

The older LSAY cohort, Cohort One, consisted of a national sample of 2,829 tenth-grade students in public high schools throughout the United States. These students were followed for an initial period of seven years, ending four years after high school in 1994. Cohort Two, consisted of a national sample of 3,116 seventh-grade students in public schools that served as feeder schools to the same high schools in which the older cohort was enrolled. These students were followed for an initial period of seven years, concluding with a telephone interview approximately one year after the end of high school in 1994.

Beginning in the fall of 1987, the LSAY collected a wide array of information including: (1) a science achievement test and a mathematics achievement test each fall, (2) an attitudinal and experience questionnaire at the beginning and end of each school year, (3) reports about education and experience from all science and math teachers in each school, (4) reports on classroom practice by each science and math teacher serving a LSAY student, (5) an annual 25-minute telephone interview with one parent of each student, and (6) extensive school-level information from the principal of each study school.

In 2006, the NSF funded a proposal to re-contact the original LSAY students (then in their mid-30's) to resume data collection to determine their educational and occupational outcomes. Through an extensive tracking activity which involved: (1) online tracking, (2) newsletter mailing, (3) calls to parents and other relatives, (4) use of alternative online search methods, and (5) questionnaire mailing, more than 95 percent of the original sample of 5,945 LSAY students were located or accounted for. In addition to re-contacting the students, the proposal defined a new eligible sample of approximately 5,000 students and these young adults were asked to complete a survey in 2007. A second survey was conducted in the fall of 2008 that sought to gather updated information about occupational and education outcomes and to measure the civic scientific literacy of these young adults, in which to date more than 3,200 participants have responded. A third survey was conducted in the fall of 2009 that sought to gather updated information about occupational and education outcomes and to measure the participants' use of selected informal science education resources, in which to date more than 3,200 participants have responded. A fourth survey was conducted in the fall of 2010 that sought to gather updated information about occupational and education outcomes, as well as provided questions about the participants' interactions with their children, in which to date more than 3,200 participants have responded. Finally, a fifth survey was conducted in the fall of 2011 that sought to gather updated information about education outcomes and included an expanded occupation battery for all participants, as well as an expanded spousal information battery for all participants. The 2011 questionnaire also included items about the 2011 Fukushima incident in Japan along with attitudinal items about nuclear power and global climate change. To date approximately 3,200 participants responded to the 2011 survey.

There were no surveys conducted in 2012 or 2013. Beginning in 2014 the LSAY was funded by the National Institute on Aging for five years. This data release adds the 2017 data to the previous data release that included data through 2016.

The public release data files include information collected from the national probability sample students, their parents, and the science and mathematics teachers in the students' schools. The data covers the initial seven years, beginning in the fall of 1987, as well as the data collected in the 2007, 2008, 2009, 2010, 2011, 2014, 2015, 2016, and 2017 questionnaires.

Part 1: LSAY Merged Cohort (Base File) contains student and parent data from both cohorts of the LSAY from 1987-1994 and student follow-up data from 2007-2011 and 2014-2017. Additionally, Parts 2 - 5 contain information gathered from two teacher background questionnaires and two principal questionnaires from 1987-1994.