1932
0
  1. Home
  2. A-Z Publications
  3. Annual Review of Public Health
  4. Volume 35, 2014
  5. Article

Annual Review of Public Health

Volume 35, 2014

Implementing Health Reform: Improved Data Collection and the Monitoring of Health Disparities

Abstract

The relative lack of standards for collecting data on population subgroups has not only limited our understanding of health disparities, but also impaired our ability to develop policies to eliminate them. This article provides background about past challenges to collecting data by race/ethnicity, primary language, sex, and disability status. It then discusses how passage of the Affordable Care Act has provided new opportunities to improve data-collection standards for the demographic variables of interest and, as such, a better understanding of the characteristics of populations served by the U.S. Department of Health and Human Services (HHS). The new standards have been formally adopted by the Secretary of HHS for application in all HHS-sponsored population health surveys involving self-reporting. The new data-collection standards will not only promote the uniform collection and utilization of demographic data, but also help the country shape future programs and policies to advance public health and to reduce disparities.

Keyword(s): Affordable Care Act, data standards, demographic data, population-based surveys
Loading

Article metrics loading...

/content/journals/10.1146/annurev-publhealth-032013-182423
2014-03-18
2024-04-19
Loading full text...

Full text loading...

/deliver/fulltext/publhealth/35/1/annurev-publhealth-032013-182423.html?itemId=/content/journals/10.1146/annurev-publhealth-032013-182423&mimeType=html&fmt=ahah

Literature Cited

  1. 1. Agency for Healthc. Res. Quality (AHRQ) 2012. Medical Expenditure Panel Survey Rockville, MD: US Dep. Health Hum. Serv http://www.ahrq.gov/research/data/meps/index.html
  2. 2. Agency for Healthc. Res. Quality (AHRQ) 2012. National Healthcare Disparities Report Rockville, MD: US Dep. Health Hum. Serv http://www.ahrq.gov/research/findings/nhqrdr/nhdr12/nhdr12_prov.pdf
  3. Alegria M, Cao Z, McGuire TG, Ojeda VD, Sribney B. 3.  et al. 2006. Health insurance coverage for vulnerable populations: contrasting Asian Americans and Latinos in the United States. Inquiry 43:231–54 [Google Scholar]
  4. 4. Am. Coll. Physicians 2007. Language Services for Patients with Limited English Proficiency: Results of a National Survey of Internal Medicine Physicians. Philadelphia, PA: Am. Coll. Physicians
  5. Aryal S, Diaz-Guzman E, Mannino DM. 5.  2013. COPD and gender differences: an update. Transl. Res. 162:208–18 [Google Scholar]
  6. Bierman AS, Lurie N, Collins KS, Eisenberg JM. 6.  2002. Addressing racial and ethnic barriers to effective health care: the need for better data. Health Aff. 21:91–102 [Google Scholar]
  7. Bilheimer LT, Klein RJ. 7.  2010. Data and measurement issues in the analysis of health disparities. Health Serv. J. 45:1489–507 [Google Scholar]
  8. Bilheimer LT, Sisk JE. 8.  2008. Collecting adequate data on racial and ethnic disparities in health: the challenges continue. Health Aff. 27:383–91 [Google Scholar]
  9. Brault M, Stern S, Raglin D. 9.  2007. Evaluation report covering disability. 2006 American Community Survey Content Test Report4 Washington, DC: US Census Bur. [Google Scholar]
  10. Brault MW. 10.  2012. American with Disabilities: 2010, Household Economic Studies Washington, DC: US Census Bur http://www.crccertification.com/filebin/pdf/AmericansWithDisabilities_USCensusBureau2010.pdf
  11. 11. Cent. Dis. Control Prev. (CDC) 2007. No Usual Source of Care Among Children Atlanta, GA: CDC http://www.cdc.gov/nchs/health_policy/children_no_source_health_care.htm
  12. 12. Cent. Dis. Control Prev. (CDC) 2011. CDC Health Disparities and Inequalities Report—United States, 2011 Atlanta, GA: CDC http://www.cdc.gov/mmwr/pdf/other/su6001.pdf
  13. 13. Cent. Dis. Control Prev. (CDC) 2013. Behavioral Risk Factor Surveillance System Atlanta, GA: CDC http://www.cdc.gov/BRFSS/index.htm
  14. 14. Cent. Medicare Medicaid Serv 2013. Census Data to Target the Uninsured. Baltimore, MD: Cent. Medicare Medicaid Serv http://marketplace.cms.gov/exploreresearch/census-data.html
  15. Cheng EM, Chen A, Cunningham W. 15.  2007. Primary language and receipt of recommended health care among Hispanics in the United States. J. Gen. Intern. Med. 22:Suppl. 2283–88 [Google Scholar]
  16. Choi S, Lee JA, Rush E. 16.  2011. Ethnic and language disparities in diabetes care among California residents. Ethn. Dis. 21:183–89 [Google Scholar]
  17. Chu R, Wong D, Robinson W, Finegold K. 17.  2012. The Affordable Care Act and Asian Americans and Pacific Islanders Washington, DC: US Dep. Health Hum. Serv http://aspe.hhs.gov/health/reports/2012/ACA&AsianAmericans&PacificIslanders/rb.shtml
  18. Clarke JN. 18.  1983. Sexism, feminism and medicalism: a decade review of literature on gender and illness. Sociol. Health Illn. 5:62–82 [Google Scholar]
  19. 19. Comm. Underst. Elimin. Racial Ethn. Disparities Health Care, Inst. Med. (IOM) 2003. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care BD Smedley, AY Stith, AR Nelson Washington, DC: Natl. Acad. Press
  20. Crilly M, Bundred P, Hu X, Leckey L, Johnstone F. 20.  2007. Gender differences in the clinical management of patients with angina pectoris: a cross-sectional survey in primary care. BMC Health Serv. Res. 7:142 [Google Scholar]
  21. Cuellar A, Simmons A, Finegold K. 21.  2012. The Affordable Care Act and Women Washington, DC: Off. Assist. Secr. Plan. Eval., US Dep. Health Hum. Serv http://aspe.hhs.gov/health/reports/2012/ACA&Women/rb.shtml
  22. DeNavas-Walt C, Proctor BD, Smith JC. 22.  2010. Income, Poverty, and Health Insurance Coverage in the United States: 2009. Curr. Popul. Rep. P60-238 Washington, DC: US Census Bur.
  23. Derose KP, Bahney BW, Lurie N, Escarce JJ. 23.  2009. Review: Immigrants and health care access, quality, and cost. Med. Care Res. Rev. 66:355–408 [Google Scholar]
  24. Derose KP, Baker DW. 24.  2000. Limited English proficiency and Latinos' use of physician services. Med. Care Res. Rev. 57:76–91 [Google Scholar]
  25. Divi C, Koss RG, Schmaltz SP, Loeb JM. 25.  2007. Language proficiency and adverse events in US hospitals: a pilot study. Int. J. Qual. Health Care 19:60–67 [Google Scholar]
  26. Dohan D, Levintova M. 26.  2007. Barriers beyond words: cancer, culture, and translation in a community of Russian speakers. J. Gen. Intern. Med. 2:300–5 [Google Scholar]
  27. Doonan MT, Tull KR. 27.  2010. Health care reform in Massachusetts: implementation of coverage expansions and a health insurance mandate. Milbank Q. 88:54–80 [Google Scholar]
  28. Dorsey R, Graham G. 28.  2011. New HHS data standards for race, ethnicity, sex, primary language and disability status. JAMA 306:2378–79 [Google Scholar]
  29. Drum C, McClain MR, Horner-Johnson W, Taitano G. 29.  2011. Health Disparities Chart Book on Disability and Racial and Ethnic Status in the United States Durham, NH: Inst. Disabil., Univ. N.H http://www.iod.unh.edu/pdf/Health%20Disparities%20Chart%20Book_080411.pdf
  30. DuBard CA, Gizlice Z. 30.  2008. Language spoken and differences in health status, access to care, and receipt of preventive services among US Hispanics. Am. J. Public Health 98:2021–28 [Google Scholar]
  31. Flores G. 31.  2006. Language barriers to health care in the United States. N. Engl. J. Med. 355:229–31 [Google Scholar]
  32. Flores G, Abreu M, Tomany-Korman SC. 32.  2005. Limited English proficiency, primary language at home, and disparities in children's health care: how language barriers are measured matters. Public Health Rep. 120:418–30 [Google Scholar]
  33. Flores G, Tomany-Korman SC. 33.  2008. The language spoken at home and disparities in medical and dental health, access to care, and use of services in US children. Pediatrics 121:e1703–14 [Google Scholar]
  34. Gans D, Kinane CM, Watson G, Roby DH, Needleman J. 34.  et al. 2012. Achieving Equity by Building a Bridge from Eligible to Enrolled Los Angeles: UCLA Cent. Health Policy Res., Calif. Pan-Ethn. Health Netw http://www.cpehn.org/pdfs/EligibletoEnrolledBrief.pdf
  35. Gibson C, Jung K. 35.  2002. Historical census statistics on population totals by race, 1790 to 1990, and by Hispanic origin, 1970 to 1990, for the United States, regions, divisions, and states Work. Pap. Ser. No. 56., US Census Bur. Popul. Div., Washington, DC
  36. Harris-Kojetin BA. 36. Off. Manag. Budget. (OMB) 2012. Federal agency approaches to providing statistical information on detailed Asian and Native Hawaiian and Other Pacific Islander groups Stat. Policy Work. Pap., OMB, Washington, DC. http://www.whitehouse.gov/sites/default/files/docs/omb_spwp_on_detailed_race_groups_final_8-7-12.pdf
  37. Hasnain-Wynia R, Pierce D, Pittman MA. 37.  2004. Who, When, and How: The Current State of Race, Ethnicity, and Primary Language Data Collection In Hospitals Washington, DC: Commonw. Fund http://www.commonwealthfund.org/Publications/Fund-Reports/2004/May/Who–When–and-How–The-Current-State-of-Race–Ethnicity–and-Primary-Language-Data-Collection-in-Ho.aspx
  38. Hasnain-Wynia R, Van Dyke K, Youdelman M, Krautkramer C, Ivey SL. 38.  et al. 2010. Barriers to collecting patient race, ethnicity, and primary language data in physician practices: an exploratory study. J. Natl. Med. Assoc. 102:769–75 [Google Scholar]
  39. Healthcare gov. 39.  2010. The Affordable Care Act Washington, DC: US Dep. Health Hum. Serv http://www.healthcare.gov/law/full/index.html
  40. Healthcare gov. 40.  2010. Preventive Services Covered Under the Affordable Care Act Washington, DC: US Dep. Health Hum. Serv http://www.hhs.gov/healthcare/facts/factsheets/2010/07/preventive-services-list.html
  41. Healthcare gov. 41.  2011. Affordable Care Act Rules on Expanding Access to Preventative Services for Women Washington, DC: US Dep. Health Hum. Serv http://www.hhs.gov/healthcare/facts/factsheets/2011/08/womensprevention08012011a.html
  42. Healthcare gov. 42.  2013. People with Disabilities and the Affordable Care Act Washington, DC: US Dep. Health Hum. Serv http://www.hhs.gov/od/aca_fact_sheet.pdf
  43. Hibbard JH, Pope CR. 43.  1986. Another look at sex differences in the use of medical care: illness orientation and the types of morbidities for which services are used. Women Health 11:21–36 [Google Scholar]
  44. Humes K. 44.  2009. 2010 Census Alternative Questionnaire Experiment: Race and Hispanic Origin Treatments Fin. Rep Washington, DC: US Census Bur., Popul. Div http://www.nilpnetwork.org/Census_-_Alt_Exper_Ques_Plan_-_Summer_2010.pdf
  45. Humes K, Jones NA, Ramirez RR. 45.  2011. Overview of Race and Hispanic Origin, 2010 Census Brief Washington, DC: US Census Bur.
  46. Iezzoni LI. 46.  2010. Multiple chronic conditions and disabilities: implications for health services research and data demands. Health Serv. Res. 45:1523–40 [Google Scholar]
  47. Iezzoni LI. 47.  2011. Eliminating health and health care disparities among the growing population of people with disabilities. Health Aff. (Project Hope) 30:1947–54 [Google Scholar]
  48. 48. Joint Cent. Polit. Econ. Stud 2010. Patient Protection and Affordable Care Act of 2010: Advancing Health Equity for Racially and Ethnically Diverse Populations. Washington, DC: Joint Cent. Polit. Econ. Stud http://www.jointcenter.org/sites/default/files/upload/research/files/Patient%20Protection%20and%20Affordable%20Care%20Act.pdf
  49. Kaneshiro B, Geling O, Gellert K, Millar L. 49.  2011. The challenges of collecting data on race and ethnicity in a diverse, multiethnic state. Hawaii Med. J. 70:168–71 [Google Scholar]
  50. Kim G, Worley CB, Allen RS, Vinson L, Crowther MR. 50.  et al. 2011. Vulnerability of older Latino and Asian immigrants with limited English proficiency. J. Am. Geriatr. Soc. 59:1246–52 [Google Scholar]
  51. Kim JS. 51.  1990. Sex role effects on female response to illness. Korea J. Popul. Dev. 19:135–55 [Google Scholar]
  52. Koh HK, Berwick DM, Clancy CM, Baur C, Brach C. 52.  et al. 2012. New federal policy initiatives to boost health literacy can help the nation move beyond the cycle of costly ‘crisis care’. Health Aff. (Project Hope) 31:434–43 [Google Scholar]
  53. Krahn GL, Hammond L, Turner A. 53.  2006. A cascade of disparities: health and health care access for people with intellectual disabilities. Ment. Retard. Dev. Disabil. Res. Rev. 12:70–82 [Google Scholar]
  54. Kutner M, Greenberg E, Jin Y, Paulsen C. 54.  2006. The Health Literacy of America's Adults: Results from the 2003 National Assessment of Adult Literacy NCES 2006483 Washington, DC: Natl. Cent. Educ. Stat.
  55. Lewis A. 55.  2009. Disability disparities: a beginning model. Disabil. Rehabil. 31:1136–43 [Google Scholar]
  56. Manly JJ. 56.  2006. Deconstructing race and ethnicity: implications for measurement of health outcomes. Med. Care 44:S10–16 [Google Scholar]
  57. Martinez CH, Raparla S, Plauschinat CA, Giardino ND, Rogers B. 57.  et al. 2012. Gender differences in symptoms and care delivery for chronic obstructive pulmonary disease. J. Womens Health 21:1267–74 [Google Scholar]
  58. Mays VM, Ponce NA, Washington DL, Cochran SD. 58.  2003. Classification of race and ethnicity: implications for public health. Am. J. Public Health 24:83–110 [Google Scholar]
  59. McKenney NR, Bennett CE. 59.  1994. Issues regarding data on race and ethnicity: the Census Bureau experience. Public Health Rep. 109:16–25 [Google Scholar]
  60. Moy E, Arispe IE, Holmes JS, Andrews RM. 60.  2005. Preparing the National Healthcare Disparities Report: gaps in data for assessing racial, ethnic, and socioeconomic disparities in health care. Med. Care 43:I9–16 [Google Scholar]
  61. Murray CJ, Kulkarni SC, Michaud C, Tomijima N, Bulzacchelli MT. 61.  et al. 2006. Eight Americas: investigating mortality disparities across races, counties, and race-counties in the United States. PLoS Med. 3:e260 [Google Scholar]
  62. Nathanson CA. 62.  1977. Sex, illness, and medical care: a review of data, theory, and method. Soc. Sci. Med. 11:13–25 [Google Scholar]
  63. 63. Natl. Assoc. Community Health Cent., Robert Graham Cent 2007. Access Denied: A Look into America's Medically Disenfranchised Washington, DC: Robert Graham Cent http://www.graham-center.org/prebuilt/Access_Denied.pdf
  64. 64. Natl. Cent. Health Stat 2013. National Health and Nutrition Examination Survey. Atlanta, GA: CDC http://www.cdc.gov/nchs/nhanes.htm
  65. 65. Natl. Cent. Health Stat 2010. National Health Interview Survey. Hyattsville, MD: Centers for Disease Control and Prevention http://www.cdc.gov/nchs/nhis.htm
  66. 66. Natl. Inst. Minor. Health Health Dispar 2013. Social Determinants of Health Initiative. Washington, DC:US Dep. Health Hum. Serv http://www.nimhd.nih.gov/recovery/goSocialDeterm.asp
  67. 67. Off. Assist. Secr. Plan. Eval 2011. Overview of the Uninsured in the United States: A Summary of the 2011 Current Population Survey. Wahington, DC: US Dep. Health Hum. Serv http://aspe.hhs.gov/health/reports/2011/CPSHealthIns2011/ib.shtml
  68. 68. Off. Assist. Secr. Plan. Eval 2013. Guide to HHS Surveys and Data Resources. Washington, DC: US Dep. Health Hum. Serv http://aspe.hhs.gov/sp/surveys/index.cfm
  69. 69. Off. Dis. Prev. Health Promot 2010. Healthy People 2020. Washington, DC: US Dep. Health Hum. Serv http://www.healthypeople.gov/2020/TopicsObjectives2020/pdfs/HP2020_brochure_with_LHI_508.pdf
  70. 70. Off. Dis. Prev. Health Promot 2010. National Action Plan to Improve Health Literacy. Washington, DC: US Dep. Health Hum. Serv http://www.health.gov/communication/hlactionplan/pdf/Health_Literacy_Action_Plan.pdf
  71. 71. Off. Disabil 2010. Substance Abuse and Disability: A Companion to Chapter 26 of Healthy People 2010. Washington, DC:US Dep. Health Hum. Serv http://www.hhs.gov/od/about/fact_sheets/substanceabusech26.html
  72. 72. Off. Manag. Budget. (OMB) 1997. Recommendation from the Interagency Committee for the review of the racial and ethnic standards to the Office of Management and Budget concerning changes to the standards for classification of federal data on race and ethnicity. Fed. Regist. July 9 36873–946 http://www.whitehouse.gov/omb/fedreg_directive_15
  73. 73. Off. Manag. Budget. (OMB) 1997. Revisions to the standards for the classification of federal data on race and ethnicity. Fed. Regist Oct. 30. http://www.whitehouse.gov/omb/fedreg_1997standards/
  74. 74. Off. Minor. Health 2011. Explanation of Data Standards for Race, Ethnicity, Sex, Primary Language, and Disability. Rockville, MD:US Dep. Health Hum. Serv http://minorityhealth.hhs.gov/templates/content.aspx?ID=9228&lvl=2&lvlID=208
  75. Raine R. 75.  2000. Does gender bias exist in the use of specialist health care?. J. Health Serv. Res. Policy 5:237–49 [Google Scholar]
  76. Ramírez M, Ford ME, Stewart AL, Teresi JA. 76.  2005. Measurement issues in health disparities research. Health Serv. Res. 40:1640–57 [Google Scholar]
  77. Reichard A, Stolzle H, Fox MH. 77.  2011. Health disparities among adults with physical disabilities or cognitive limitations compared to individuals with no disabilities in the United States. Disabil. Health J. 4:59–67 [Google Scholar]
  78. 78. Res. Data Assist. Cent 2013. Medicare Current Beneficiary Survey Minneapolis, MN: Cent. Medicare Medicaid Serv http://www.resdac.org/cms-data/file-family/Medicare-Current-Beneficiary-Survey-MCBS
  79. Richesson RL, Krischer J. 79.  2007. Data standards in clinical research: gaps, overlaps, challenges and future directions. J. Am. Med. Inform. Assoc. 14:687–96 [Google Scholar]
  80. Sebelius K. 80.  2011. Report to Congress: Approaches for Identifying, Collecting, and Evaluating Data on Health Care Disparities in Medicaid and CHIP Washington, DC: US Health Hum. Serv.
  81. Shin HB, Kominski RA. 81.  2010. Language Use in the United States: 2007 Am. Community Survey Rep. ACS-12 Washington, DC: US Census Bur.
  82. Smedley BD. 82.  2008. Moving beyond access: achieving equity in state health care reform. Health Aff. 27:447–55 [Google Scholar]
  83. Sondik EJ, Huang DT, Klein RJ, Satcher D. 83.  2010. Progress toward the Healthy People 2010 goals and objectives. Annu. Rev. Public Health 31:271–81 [Google Scholar]
  84. Sondik EJ, Lucas JW, Madans JH, Smith SS. 84.  2000. Race/ethnicity and the 2000 census: implications for public health. Am. J. Public Health 90:1709–13 [Google Scholar]
  85. Srinivasan S, Guillermo T. 85.  2000. Toward improved health: disaggregating Asian American and Native Hawaiian/Pacific Islander data. Am. J. Public Health 90:1731–34 [Google Scholar]
  86. 86. Subcomm. Stand. Collect. Race/Ethn. Data Healthc. Quality Improv., Inst. Med. (IOM) 2009. Race, Ethnicity, and Language Data: Standardization for Health Care Quality Improvement Rep. Brief, Aug Washington, DC: Natl. Acad. Press
  87. 87. Subst. Abuse Ment. Health Serv. Adm 2011. Substance use disorder in people with physical and sensory disabilities. In Brief 6:11–7 [Google Scholar]
  88. 88. Subst. Abuse Ment. Health Serv. Adm., Off. Appl. Stud 2009. National Survey on Drug Use and Health Rockville, MD: US Dep. Health Hum. Serv http://www.oas.samhsa.gov/nsduh.htm
  89. 89. US Census Bur 2012. Through the Decades Washington, DC: US Dep. Commer http://www.census.gov/history/www/through_the_decades/
  90. 90. US Census Bur 2013. American Community Survey Washington, DC: US Dep. Commer http://www.census.gov/acs/www/about_the_survey/american_community_survey/
  91. 91. US Census Bur 2010. Decennial Census Washington, DC: US Dep. Commer http://www.census.gov/history/www/programs/demographic/decennial_census.html
  92. van Schrojenstein Lantman-de Valk H, Linehan C, Kerr M, Noonan-Walsh P. 92.  2007. Developing health indicators for people with intellectual disabilities. The method of the Pomona project. J. Intellect. Disabil. Res. 51:427–34 [Google Scholar]
  93. Verbrugge LM. 93.  1982. Sex differentials in health. Public Health Rep. 97:417–37 [Google Scholar]
  94. Wallman KK, Evinger S, Schechter S. 94.  2000. Measuring our nation's diversity: developing a common language for data on race/ethnicity. Am. J. Public Health 90:1704–8 [Google Scholar]
  95. Walsh PN. 95.  2008. Health indicators and intellectual disability. Curr. Opin. Psychiatry 21:474–78 [Google Scholar]
  96. Waters MC. 96.  2000. Immigration, intermarriage, and the challenges of measuring racial/ethnic identities. Am. J. Public Health 90:1735–37 [Google Scholar]
  97. Weinick RM, Krauss NA. 97.  2000. Racial/ethnic differences in children's access to care. Am. J. Public Health 90:1771–74 [Google Scholar]
  98. Wingard DL, Cohn BA, Kaplan GA, Cirillo PM, Cohen RD. 98.  1989. Sex differentials in morbidity and mortality risks examined by age and cause in the same cohort. Am. J. Epidemiol. 130:601–10 [Google Scholar]
  99. 99. World Health Organ. (WHO) 2009. Social determinants of health WHO, Geneva. http://www.who.int/social_determinants/en/
  100. 100. World Health Organ. (WHO) 2013. International Classification of Functioning, Disability and Health (ICF) Geneva: WHO http://www.who.int/classifications/icf/en/ [Google Scholar]
  101. Wright S. 101.  2006. The Civil Rights Act of 1964: Landmark Anti-Discrimination Legislation New York: Rosen
  102. Yu MK, Lyles CR, Bent-Shaw LA, Young BA. 102.  2013. Sex disparities in diabetes process of care measures and self-care in high-risk patients. J. Diabetes Res. 2013: Art. 575814
  103. Yu SM, Nyman RM, Kogan MD, Huang ZJ, Schwalberg RH. 103.  2004. Parent's language of interview and access to care for children with special health care needs. Ambul. Pediatr. 4:181–87 [Google Scholar]
/content/journals/10.1146/annurev-publhealth-032013-182423
Loading
Implementing Health Reform: Improved Data Collection and the Monitoring of Health Disparities
Annual Review of Public Health 35, 123 (2014); https://doi.org/10.1146/annurev-publhealth-032013-182423
/content/journals/10.1146/annurev-publhealth-032013-182423
/content/journals/10.1146/annurev-publhealth-032013-182423
Loading

Data & Media loading...

  • Article Type: Review Article

Most Cited Most Cited RSS feed

This is a required field
Please enter a valid email address
Approval was a Success
Invalid data
An Error Occurred
Approval was partially successful, following selected items could not be processed due to error