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National Center for Health Statistics Record Linkage Program

National Center for Health Statistics Record Linkage Program. Christine S. Cox, Chief, Special Projects Branch (SPB) Office of Analysis & Epidemiology (OAE) NCHS Data Users Conference August 12, 2008 U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

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National Center for Health Statistics Record Linkage Program

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  1. National Center for Health Statistics Record Linkage Program Christine S. Cox, Chief, Special Projects Branch (SPB) Office of Analysis & Epidemiology (OAE) NCHS Data Users Conference August 12, 2008 U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES Centers for Disease Control and Prevention National Center for Health Statistics

  2. Overview • NCHS Record Linkage Program • Analytic Issues & Tools • Comparative Analysis of Public vs Restricted Linked Mortality Files • Accessing the Restricted-use Linked Data

  3. NCHS Record Linkage Program • Links survey data with data collected from administrative records • Designed to maximize the scientific value of the NCHS population-based surveys • Examine factors that influence chronic disease, disability, health care utilization, morbidity, and mortality

  4. Why Do Linkage? • Augments available information for major diseases, risk factors, and health service utilization • Links exposures to outcomes • Provides longitudinal component to survey data • Reduces cost burden • Re-contacting survey respondents for follow-up information can be expensive • Increases accuracy and detail of data collected

  5. NCHS Records NCHS Records Administrative Records Administrative Records SSN SSN SSN Name Name Name Name DoB DoB DoB DoB Sex Sex Sex Sex State of Birth State ofBirth State of Birth State of Birth Race Race Race Race State of Residence State of Residence State of Residence State of Residence Marital Status MaritalStatus Marital Status Marital Status Scoring system, Scoring system, Potential matches Potential matches Non matches Non matches clerical review clerical review True matches True matches Non matches Non matches Linked Data File Linked Data File How Records are Linked

  6. Research Potential of NCHS Linked Data • Aging • Risk factors for poor health outcomes (hip fractures, stroke, etc.) • Disability • Effects of chronic illness and obesity on disability and mortality • Disparities • Mortality patterns by race/ethnicity or socioeconomic status • Health services • Functional impairment and health care costs • Methodologic Studies • Validation of self-reports vs. administrative records • Genetics • Genetic variants and health outcomes

  7. Record Linkage Activities • Mortality • National Death Index • Social Security Retirement and Disability • Data from the Retirement, Survivors, Disability Insurance (RSDI) and Supplemental Security Income (SSI) programs • Medicare enrollment and payments • Enrollment and claims data

  8. NCHS Health Surveys Completed Linkage (death data through 2000/2002) Future Linkage (death data through 2006) Restricted-use Public-use Restricted-use Public-use NHIS 1986-2000 X X X† X† NHIS 2001-2004 X† X† LSOA II (1994-2000) X X X X NHEFS (1971-1992) X X X NHANES II (1976-1980) X X X NHANES III (1988-1994) X X X† X† NHANES 1999-2004 X† X† NNHS 1985 X X NNHS 1995, 1997, 2004 X NCHS Linked Mortality Data Files † Children included

  9. NCHS Survey Total Deaths NHIS 1986-2000 121,138 LSOA II 3,958 NHEFS 6,656 NHANES II 4,143 NHANES III 3,384 Number of Deaths by Survey NHIS and LSOA II have mortality follow-up through 12/31/2002. NHEFS, NHANES II and III have mortality follow-up through 12/31/2000.

  10. Public-use Linked Mortality Files • In 2007, released public-use files with a limited amount of perturbed data and reduced number of mortality variables • NHIS 1986-2000 • NHANES III • LSOA II • Study comparing analyses from public-use and restricted-use linked mortality files demonstrated similar results • Lochner et al. Am. J. Epidemiol. 2008 168: 336-344

  11. Mortality Data Elements • Vital status • Date of death or follow-up time • Underlying cause of death • Multiple cause of death* • Age at death* • Age last presumed alive* • *only available on restricted-use files

  12. Journal of Epidemiology & Community Health Research Potential of Linked Mortality Data • Excess Deaths Associated with Underweight, Overweight, and ObesityKM Flegal, BI Graubard, DF Williamson, MH Gail; JAMA, 2005;293:1861-1867. • Living and Dying in the USA: Behavioral, Health, and Social Differentials of Adult Mortality RG Rogers, CB Nam, RA Hummer; 2000. • Suicide among male veterans: a prospective population-based study MS Kaplan, N Huguet, BH McFarland, JT Newsom; J Epidemiol Community Health, 2007; 61:619-624.

  13. Completed Linkage CMS data 1991-2000 Future Linkage CMS data 1999-2007 NHIS 1994-1998 X X NHIS 1999-2005 X LSOA II (1994-2000) X X NHEFS (1971-1992) X X NHANES II (1976-1980) X X NHANES III (1988-1994) X X NHANES 1999-2004 X NNHS 1997, 2004 X NCHS Linked Medicare Data Files

  14. Medicare Linkage • Medicare enrollment and claims data for the years 1991-2000 • Denominator file • MEDPAR Inpatient hospitalization • MEDPAR Skilled nursing facility (SNF) • Hospital outpatient • Home Health Agency (HHA) • Hospice • Carrier (physician/supplier Part B file) • Durable Medical Equipment (DMERC) • Next data release (1999-2007) • All of the above files • Chronic Conditions Warehouse • Medicare Part D (Prescription Drugs)

  15. Summary Medicare Data File • Summary Medicare Enrollment and Claims Files (SMEC) for 1991-2000 • Enrollment information from the Denominator file plus summary variables of claims and payments • Variables modeled after MCBS cost and use files • Total reimbursements per year • Total number of claims by Medicare record type • Summary of charges by Medicare record type • Termination status & reason for termination • Monthly HMO enrollment • Medicare status code (i.e. Part A, B or both)

  16. Research Potential of Linked Medicare Data • Examine risk factors for health conditions • Examine reliability of survey data • Compare survey reported Medicare enrollment to Medicare claims records • Examine survey report of disability with program participation eligibility criteria • Examine disparities in Medicare service utilization

  17. Completed Linkage SSA data 1962-2003 Future Linkage SSA data 1962-2007 NHIS 1994-1998 X X NHIS 1999-2005 X LSOA II (1994-2000) X X NHEFS (1971-1992) X X NHANES III (1988-1994) X X NHANES 1999-2004 X NNHS 1985 X X NNHS 1995, 1997, 2004 X NCHS Linked SSA Data Files

  18. Social Security Linkage • Old Age, Survivor, & Disability Income • Master Beneficiary Record (MBR), 1962 - 2003 • Program eligibility, benefit amount, payment status, dual entitlement • Payment History Update System (PHUS), 1984-2003 • Benefit payment amounts, including withholding information for Medicare Part B premiums • Supplemental Security Income • Supplemental Security Record (SSR), 1974 - 2003 • Program eligibility, benefit information, and payment status

  19. Research Potential of Linked Social Security Data • Examine reliability of survey information for SSA program participation and benefits • Compare the health characteristics of early retirees (age 62) to those who postpone benefits • Policy analysis using validated survey data • Predicting the number of people who will become disabled based upon survey reported health conditions • Determining whether current disability entitlement funding levels will be adequate as the population ages

  20. Future Linkage Activities • Linkage of 1999-2004 Medicaid enrollment and claims data linked to 1999-2004 NHIS and NHANES • NCHS series report comparing the mortality experience of the 1986-2000 National Health Interview Survey Participants with the U.S. population

  21. Overview • NCHS Record Linkage Program • Analytic Issues & Tools • Comparative Analysis of Public vs Restricted Linked Mortality Files • Accessing the Restricted-use Linked Data

  22. National Center for Health Statistics Record Linkage ProgramAnalytic Issues and Tools Kimberly A. Lochner, SPB, OAE NCHS Data Users Conference August 12, 2008 U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES Centers for Disease Control and Prevention National Center for Health Statistics

  23. Analytic Issues: Overview • Linkage eligibility • Linkage match status • Combining survey years for the linked mortality files • Changes in surveys or administrative data over time • Issues with administrative data

  24. Mortality: Analytic Issues • Eligibility status • Sample weights • Combining survey years for the linked mortality files • Variance estimation • Changes over time • ICD-9 and ICD-10 codes • Most of these issues apply only to the NHIS Linked Mortality Files

  25. Eligibility Status • What determines eligibility for mortality follow-up? • Age • Non “adult” survey respondents are INELIGIBLE • Future linkages will include children • Sufficient data for matching • Lack of identifying data makes you INELIGIBLE • Drop INELIGIBLE survey respondents • Variable indicating eligibility status on files

  26. NCHS Health Survey % Ineligible NHIS 1986 - 1991 < 2.0 NHIS 1992-1996 2.0 – 3.0 NHIS 1997-2000 8.0 – 11.0 NHEFS 0.0 NHANES II 0.0 NHANES III 0.13 Mortality Ineligibility:Lack of Matching Data (adults only)

  27. Eligibility Status • Ineligibility a problem for NHIS • Created new sample weights to account for ineligibility due to insufficient identifying data • Original NHIS sample weights (WTFA) • New NHIS sample weights (WGT_NEW) • Only for core/person files • Recommend using WGT_NEW

  28. Combining Survey Years • NHIS linked mortality files cover two design periods (1986-1994 and 1995-2000) • Follow guidelines on pooling NHIS years • http://www.cdc.gov/nchs/nhis/methods.htm • Created new stratum and psu variables for NHIS Linked Mortality files to allow combining across NHIS design years

  29. Changes in Data Over Time • ICD-9 (deaths 1979 – 1998) and ICD-10 (deaths 1999 to present) cover linked mortality files • Use both sets of codes to obtain full counts of cause-specific deaths • Individual codes (ICD_9REV, ICD_10REV) • Recodes • UCOD_282, (ICD-9) • UCOD_72, (ICD-9) • UCOD_34, (ICD-9) • UCOD_358, (ICD-10) • UCOD_113 - recodes deaths before 1998 using ICD-10 guidelines • Refer to vital statistics report on ICD comparability

  30. Medicare: Analytic Issues • Eligibility status • Eligible but not matched • Death • Linked but no Medicare data • Managed care enrollment • Non covered services • Gaps in coverage • Issues with Medicare data files • See the NCHS-CMS linkage web page under “Analytic/Programming Support”

  31. NCHS Health Survey % Ineligible % Linked among eligible NHIS 1994 17.9 92.8 NHIS 1995 19.3 92.8 NHIS 1996 22.2 92.1 NHIS 1997 30.7 93.7 NHIS 1998 40.3 92.4 LSOA II 20.4 96.2 NHEFS 7.1 84.9 NHANES II 0.0 81.0 NHANES III 1.9 95.9 Medicare Ineligible Population and Linkage Rates (65+ years)

  32. Ineligibles and Non-Matches • Must be excluded from your sample • Identify using the variable (CMS_MATCH) on the Feasibility Study Data files

  33. Identifying Deaths • Survey participants interviewed before the availability of linked Medicare files could have died before 1991 • E.g. NHEFS, NHANES II or NHANES III respondents interviewed in Phase I (1988-91) • Persons may die during study period and cease to have Medicare records • Enrolled in Medicare in 1991 but died before 2000

  34. Identifying Deaths • Survey respondents who died before 1991 (e.g. from NHANES) can be identified by merging mortality information from the Linked Mortality files • Needed to create analytic sample • Persons who died during 1991-2000 should no longer have Medicare records after date of death • Look for a CMS date of death (DOD) on each of the Denominator or SMEC files (1991 to 2000)

  35. Linked but no Medicare data • No denominator file because • Loss of entitlement during 1991-2000 • Deceased prior to 1991 • CMS record keeping inconsistencies • No claims data • Not utilizing Medicare in 1991-2000 • No reimbursable claims • CMS record keeping inconsistencies

  36. No Denominator Record • Lack of denominator record can affect your analytic sample – why? • Can’t determine managed care enrollment • In general, managed care enrollees are excluded from sample (more on this to come)

  37. Managed Care Enrollment • Medicare does not receive claims for beneficiaries enrolled in managed care plans (HMO) • Do not have complete information on payments or services received • Could miss health events that are being counted based upon submitted claims • Complex issue. Refer to ResDAC • http://www.resdac.umn.edu/

  38. How managed care enrollees affect your research depends upon your question… • Studies on reimbursements/charges • Option may be to exclude those with any managed care enrollment because you don’t have complete information on payments or services received • Studies on health outcomes/events • Option may be to exclude those with any managed care enrollment because you could miss events • Option may be to censor observations at time of first HMO enrollment • Other methods for addressing HMO enrollment possible depending upon research question

  39. Services not covered in Medicare 1991-2000 files • Out-patient prescription drugs • Routine physical and dental exams • Dentures • Eye glasses • Out-of-pocket expenses for Medicare beneficiaries (e.g. deductibles, coinsurance)

  40. SSA: Analytic Issues • Eligibility status • Eligible but not matched • Linked but no benefit history data • Records are extracted from files designed for program administration - not for research

  41. NCHS Health Surveys % Ineligible % Linked among Eligible NHIS 1994 18.6 91.7 NHIS 1995 20.5 90.2 NHIS 1996 25.3 89.1 NHIS 1997 31.4 88.0 NHIS 1998 37.7 86.7 LSOA II 19.1 97.6 NHEFS 6.0 94.6 NHANES III 2.9 95.3 NNHS 1985 5.6 93.3 SSA Ineligible Population and Linkage Rates

  42. Ineligibles and Non-Matches • Must be excluded from your sample • Identify using the variable (SSA_MATCH) on the Feasibility Study Data files

  43. Linked but no SSA Data • Linkage is to SSA NUMIDENT file • Linked to NUMIDENT file but may not be eligible for Social Security benefits • Not age eligible for retirement • Defer retirement benefits because working full-time • Not eligible for Social Security

  44. Issues with Administrative Data • Administrative data updates • Payment history updates • Previously denied claims may be overridden • Changes to type of benefit status • Individuals receiving disability (DI) switch to retirement (R) benefits at age 65 in RSDI program • Complicated data • File layouts are complex, e.g. each MBR record has 2 parts • Calculation of benefits not straightforward, e.g. SSI benefits come from both federal and state programs

  45. Final Tips • Read relevant documentation !!! • Survey file layouts & detailed notes • Linkage methodology reports • Sample SAS & STATA input statements for public-use linked mortality files • Analytic guidelines • Consult basic program information • CMS – http://www.cms.gov • ResDAC – http://www.resdac.umn.edu (Medicare) • SSA – http://www.ssa.gov and http://www.ssa.gov/regulations/index.htm

  46. Final Tips • Determine NCHS public-use files needed • Determine RDC linked files needed • Determine feasibility of research question based upon successfully linked respondents • Public-use Feasibility Study Data files available indicating whether respondent was linked to Medicare or SSA data and whether there is a record on the various Medicare and/or SSA files • Match status (SSA_MATCH & CMS_MATCH)

  47. Overview • NCHS Record Linkage Program • Analytic Issues & Tools • Comparative Analysis of Public vs Restricted Linked Mortality Files • Accessing the Restricted-use Linked Data

  48. National Center for Health Statistics Record Linkage ProgramComparative Analysis of the Public-use and Restricted-use Linked Mortality Files Kimberly A. Lochner, SPB, OAE NCHS Data Users Conference August 12, 2008U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICESCenters for Disease Control and PreventionNational Center for Health Statistics

  49. Objectives • Present an overview of the newlyavailable public-use linked mortality files • National Health Interview Survey (NHIS) 1986 to 2000 • Third National Health a Nutrition Examination Survey (NHANES III) • The Second Longitudinal Study of Aging (LSOA II) • Demonstrate the analytic comparability between the public-use and restricted-use versions of the linked mortality files

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