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[1] See for example Kahn, MG, et al on data quality using a тАЬfitness for useтАЭ concept and definition. Kahn MG, Raebel MA, Glanz JM, Riedlinger K, and Stein JF. тАЬA Pragmatic Framework for Single-Site and Multisite Data Quality Assessment in Electronic Health Record-Based Clinical Research.тАЭ Medical Care, 2012; 50 Suppl: S21тАУ29.

[2] Gladwell M. The Tipping Point: How Little Things Can Make a Big Difference. New York: Little Brown, 2000.

[3] Interview with Wasserman and Fiks.

[4] Interviews with West, Schilling, and Glasgow.

[5] Interview with Walker.

[6] Interview with Walker.

[7] Chan KS, Fowles JB, and Weiner JP. тАЬReview: Electronic Health Records and the Reliability and Validity of Quality Measures: a Review of the Literature.тАЭ Medical Care Research and Review, 2010: 67(5): 503тАУ527.

[8] Interview with Hornbrook.

[9] Interviews with Hornbrook and Califf.

[10] Sabharwal R, Holve E, Rein A, and Segal C. тАЬApproaches to Using Protected Health Information (PHI) for Patient-Centered Outcomes Research (PCOR): Regulatory Requirements, De-identification Strategies, and Policy.тАЭ Issue briefs and reports, March 1, 2012, http://repository.academyhealth.org/edm_briefs/1.

[11] тАЬImproving Our National Infrastructure to Conduct Comparative Effectiveness Research.тАЭ PCORI website, accessed July 10, 2013. http://www.pcori.org/funding-opportunities/improving-our-national-infrastructure-to-conduct-comparative-effectiveness-research/

[12] Kahn MG, Raebel MA, Glanz JM, Riedlinger K, and Stein JF. тАЬA Pragmatic Framework for Single-site and Multisite Data Quality Assessment in Electronic Health Record-based Clinical Research.тАЭ Medical Care, 2012; 50 Suppl: S21тАУ29.

[13] Interview with Califf.

[14] Bradley CJ, Penberthy L, Devers KJ, and Holden DJ. тАЬHealth Services Research and Data Linkages: Issues, Methods, and Directions for the Future.тАЭ Health Services Research, 2010; 45(5p2): 1468тАУ1488.

[15] Moiduddin A and Moore J. тАЬThe Underserved and Health Information Technology: Issues and Opportunities.тАЭ Paper prepared for the Office of the Assistant Secretary for Planning and Evaluation and U.S. Department of Health and Human Services, November 2008. Available at http://aspe.hhs.gov/sp/reports/2009/underserved/report.pdf.

[16] Lavrakas PJ, and Sage Publications, Encyclopedia of Survey Research Methods (Thousand Oaks, Calif.: SAGE Publications, 2008), http://www.credoreference.com/book/sagesurveyr.

[17] Islam et al., тАЬMethodological Issues in the Collection, Analysis, and Reporting of Granular Data in Asian American Populations.тАЭ

[18] Groves RM, Fowler Jr FJ, Couper MP, Lepkowski JM, Singer E, and Tourangeau R. Survey methodology. Vol. 561. Wiley, 2009.

[19] Kempf AM and Remington PL, тАЬNew Challenges for Telephone Survey Research in the Twenty-first Century,тАЭ Annual Review of Public Health 28 (2007): 113тАУ126. doi:10.1146/annurev.publhealth.28.021406.144059.

[20] Interviews with Huang and Mueller.

[21] Interview with Lotstein.

[22] Interviews with Trinh-Shevrin and Palaniappan.

[23] Interviews with Landers and Gates.

[24] Interviews with Hartley and Ziller, Trinh-Shevrin, Huang, Snowdon, Landers, and Gates.

[25] Interviews with Lounds, Taylor, and Okumura.

[26] Hoeffel EH et al., The Asian Population: 2010, 2010 Census Briefs, March 2012, http://www.census.gov/prod/cen2010/briefs/c2010br-11.pdf.

[27] Islam NS et al., тАЬMethodological Issues in the Collection, Analysis, and Reporting of Granular Data in Asian American Populations: Historical Challenges and Potential Solutions,тАЭ Journal of Health Care for the Poor and Underserved 21, no. 4 (2010): 1354тАУ81. doi:10.1353/hpu.2010.0939.

[28] Hoeffel et al., The Asian Population: 2010.
 

[29] тАЬUnequal Treatment: Confronting Racial and Ethnic Disparities in Health Care - Institute of Medicine,тАЭ accessed February 15, 2013, http://www.iom.edu/Reports/2002/Unequal-Treatment-Confronting-Racial-and-Ethnic-Disparities-in-Health-Care.aspx.

[30] Islam et al., тАЬMethodological Issues in the Collection, Analysis, and Reporting of Granular Data in Asian American Populations.тАЭ

[31] Chen Jr MS and Hawks BL, тАЬA Debunking of the Myth of Healthy Asian Americans and Pacific Islanders,тАЭ American Journal of Health Promotion: AJHP 9, no. 4 (April 1995): 261тАУ268.

[32] http://www.pamf.org/pacs/. A similar pattern can be seen among women.

[33] Wang EJ, Wong EC, Dixit AA, Fortmann SP, Linde RB, and Palaniappan LP. 2011. тАЬType 2 Diabetes: Identifying High Risk Asian American Subgroups in a Clinical Population.тАЭ Diabetes Research and Clinical Practice 93(2): 248тАУ54. doi:10.1016/j.diabres.2011.05.025.

[34] Clough J, Lee S, and Chae DH, тАЬBarriers to Health Care among Asian Immigrants in the United States: A Traditional Review.тАЭ Journal of Health Care for the Poor and Underserved 24, no. 1 (2013): 384тАУ403. doi:10.1353/hpu.2013.0019.

[35] U.S. Census Bureau, American Community Survey (U.S. Census Bureau, 2006тАУ2007).

[36] Interview with Huang.

[37] Interviews with Ro, Palaniappan, and Huang.

[38] Chen W, тАЬChinese Female Immigrants English-speaking Ability and Breast and Cervical Cancer Early Detection Practices in the New York Metropolitan Area,тАЭ Asian Pacific Journal of Cancer Prevention: APJCP 14, no. 2 (2013): 733тАУ38.

[39] U.S. Census Bureau, The Vietnamese Population in the United States: 2010, 2011, http://www.bpsos.org/mainsite/images/DelawareValley/community_profile/us.census.2010.the%20vietnamese%20population_july%202.2011.pdf.

[40] McCracken M et al., тАЬCancer Incidence, Mortality, and Associated Risk Factors among Asian Americans of Chinese, Filipino, Vietnamese, Korean, and Japanese Ethnicities.тАЭ CA: A Cancer Journal for Clinicians 57, no. 4 (August 2007): 190тАУ205.

[41] D Nguyen, тАЬCulture ShockтАФA Review of Vietnamese Culture and Its Concepts of Health and Disease.тАЭ Western Journal of Medicine 142, no. 3 (1985): 409тАУ12.

[42] Appel HB et al. тАЬPhysical, Behavioral, and Mental Health Issues in Asian American Women: Results from the National Latino Asian American Study.тАЭ Journal of WomenтАЩs Health 20, no. 11 (November 2011): 1703тАУ11. doi:10.1089/jwh.2010.2726.

[43] American Cancer Society, тАЬCancer Facts & Figures 2013.тАЭ Accessed February 28, 2013. http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc-036845.pdf.

[44] Ma, GX et al. тАЬCorrelates of Cervical Cancer Screening among Vietnamese American Women.тАЭ Infectious Diseases in Obstetrics and Gynecology, 2012: 617234. doi:10.1155/2012/617234.

[45] Ibid.

[46] Ho, IK and Dinh KT, тАЬCervical Cancer Screening Among Southeast Asian American Women.тАЭ Journal of Immigrant and Minority Health/Center for Minority Public Health 13, no. 1 (2011): 49тАУ60. doi:10.1007/s10903-010-9358-0.

[47] Ma et al., тАЬCorrelates of Cervical Cancer Screening Among Vietnamese American Women.тАЭ

[48] Gregg J, et al. тАЬPrioritizing Prevention: Culture, Context, and Cervical Cancer Screening Among Vietnamese American Women.тАЭ Journal of Immigrant and Minority Health/Center for Minority Public Health 13, no. 6 (2011): 1084тАУ89. doi:10.1007/s10903-011-9493-2.

[49] Sentell T and Braun KL. тАЬLow Health Literacy, Limited English Proficiency, and Health Status in Asians, Latinos, and Other Racial/Ethnic Groups in California,тАЭ Journal of Health Communication 17 Suppl 3 (2012): 82тАУ99. doi:10.1080/10810730.2012.712621.

[50] Sterngass J, Filipino Americans (Infobase Publishing, 2009).

[51] U.S. Census Bureau, тАЬ2011 American Community Survey.тАЭ Accessed February 28, 2013. http://factfinder2.census.gov/faces/tableservices/jsf/pages/productview.xhtml?pid=ACS_11_1YR_B02015&prodType=table.

[52] Shin HB and Kominski RA, Language Use in the United States: 2007, American Community Survey Reports, April 2010, http://www.census.gov/prod/2010pubs/acs-12.pdf.

[53] Wang EJ et al., тАЬType 2 Diabetes: Identifying High Risk Asian American Subgroups in a Clinical Population.тАЭ Diabetes Research and Clinical Practice 93, no. 2 (2011): 248тАУ54. doi:10.1016/j.diabres.2011.05.025.

[54] Holland AT et al., тАЬSpectrum of Cardiovascular Diseases in Asian-American Racial/ethnic Subgroups,тАЭ Annals of Epidemiology 21, no. 8 (2011): 608тАУ14. doi:10.1016/j.annepidem.2011.04.004.

[55] Ibid.

[56] Appel et al., тАЬPhysical, Behavioral, and Mental Health Issues in Asian American Women.тАЭ

[57] Semics, LLC. тАЬCulture and health among Filipinos and Filipino-Americans in Central Los Angeles.тАЭ 2007. http://www.calendow.org/uploadedFiles/Publications/By_Topic/Disparities/General/Culture%20Health%20Among%20Filipinos.pdf.

[58] тАЬCharter of the Interagency Council on Statistical Policy Subcommittee on the American Community Survey,тАЭ August 10, 2012.

[59] Islam et al., тАЬMethodological Issues in the Collection, Analysis, and Reporting of Granular Data in Asian American Populations.тАЭ

[60] Interviews with Huang and Trinh-Shevrin.

[61] Interview with Trinh-Shevrin.

[62] Islam et al., тАЬMethodological Issues in the Collection, Analysis, and Reporting of Granular Data.тАЭ

[63] Appel et al., тАЬPhysical, Behavioral, and Mental Health Issues in Asian American Women.тАЭ

[64] Huang B et al., тАЬChronic Conditions, Behavioral Health, and Use of Health Services among Asian American Men: The First Nationally Representative Sample,тАЭ American Journal of MenтАЩs Health 7, no. 1 (January 2013): 66тАУ76. doi:10.1177/1557988312460885.

[65] Islam et al., тАЬMethodological Issues in the Collection, Analysis, and Reporting of Granular Data.тАЭ

[66] Holland et al., тАЬSpectrum of Cardiovascular Diseases in Asian-American Racial/ethnic Subgroups.тАЭ

[67] Wang et al., тАЬType 2 Diabetes.тАЭ

[68] See the HHS Data Council website for details: http://aspe.hhs.gov/datacncl/

[69] Centers for Medicare and Medicaid. тАЬMedicare and Medicaid EHR Incentive Program: Meaningful Use, Stage 1 Requirements Overview.тАЭ 2010. http://www.cms.gov/Regulations-and-Guidance/Legislation/EHRIncentivePrograms/Downloads/MU_Stage1_ReqOverview.pdf

[70] Hasnain-Wynia R, Pierce D, and Pittman MA, Who, When, and How: The Current State of Race, Ethnicity, and Primary Language Data Collection in Hospitals - The Commonwealth Fund, May 18, 2004, 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#citation.

[71] Hasnain-Wynia R and Baker DW, тАЬObtaining Data on Patient Race, Ethnicity, and Primary Language in Health Care Organizations: Current Challenges and Proposed Solutions,тАЭ Health Services Research 41, no. 4 Pt 1 (2006): 1501тАУ18. doi:10.1111/j.1475-6773.2006.00552.x.

[72] IOM Subcommittee on Standardized Collection of Race/Ethnicity Data for Healthcare Quality Improvement Board on Health Care Services, Race, Ethnicity, and Language Data: Standardization for Health Care Quality Improvement, accessed February 28, 2013, http://www.ahrq.gov/research/iomracereport/.

[73] McBean MA. тАЬImproving MedicareтАЩs Data on Race and Ethnicity.тАЭ Medicare Brief / National Academy of Social Insurance no. 15 (October 2006): 1тАУ7.

[74] Eicheldinger C and Bonito AJ. тАЬMore Accurate Racial and Ethnic Codes for Medicare Administrative Data.тАЭ Health Care Financing Review 29, no. 3 (2008): 27тАУ42.

[75] NORC, Understanding the Impact of Health IT in Underserved Communities and Those with Health Disparities, Briefing Paper, October 29, 2010, http://www.healthit.gov/system/files/pdf/hit-underserved-communities-health-disparities.pdf.

[76] Interview with Huang.

[77] IOM Subcommittee on Standardized Collection of Race/Ethnicity Data for Healthcare Quality Improvement Board on Health Care Services.

[78] Bonito AJ et al., Creation of New Race-Ethnicity Codes and Socioeconomic Status (SES) Indicators for Medicare Beneficiaries (Agency for Healthcare Research and Quality, January 2008), http://www.ahrq.gov/qual/medicareindicators/.

[79] Kressin NR et al., тАЬAgreement between Administrative Data and PatientsтАЩ Self-reports of Race/ethnicity,тАЭ American Journal of Public Health 93, no. 10 (October 2003): 1734тАУ1739.

[80] Bonito et al., Creation of New Race-Ethnicity Codes and Socioeconomic Status (SES) Indicators for Medicare Beneficiaries.

[81] Interviews with Trinh-Shevrin and Palaniappan.

[82] Institute of Medicine, The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding - Institute of Medicine (National Academies Press, 2011), http://www.iom.edu/Reports/2011/The-Health-of-Lesbian-Gay-Bisexual-and-Transgender-People.aspx.

[83] Mayer KH et al. тАЬSexual and Gender Minority Health: What We Know and What Needs to Be Done.тАЭ American Journal of Public Health 98, no. 6 (2008): 989тАУ95. doi:10.2105/AJPH.2007.127811.

[84] Gates, Gary J., How Many People Are Lesbian, Gay, Bisexual, and Transgender? The Williams Institute, UCLA School of Law, April 2011.

[85] Institute of Medicine, The Health of Lesbian, Gay, Bisexual, and Transgender People.

[86] Clift JB and Kirby J, тАЬHealth Care Access and Perceptions of Provider Care among Individuals in Same-Sex Couples: Findings from the Medical Expenditure Panel Survey (MEPS).тАЭ Journal of Homosexuality 59, no. 6 (2012): 839тАУ50. doi:10.1080/00918369.2012.694766.

[87] Interviews with Gates and Snowdon.

[88] Institute of Medicine, The Health of Lesbian, Gay, Bisexual, and Transgender People, pp. 6тАУ8

[89] Ibid., pp. 9тАУ10.

[90] Ibid., p. 61067.

[91] Bird ST and Bogart LM, тАЬPerceived Race-Based and Socioeconomic Status (SES)-Based Discrimination in Interactions with Health Care Providers,тАЭ Ethnicity & Disease 11, no. 3 (2001): 554тАУ63.

[92] Technical Expert Meeting discussion, July 24, 2013.

[93] Technical Expert Meeting discussion, July 24, 2013.

[94] Diamond, LM. тАЬWhat we got wrong about sexual identity development: Unexpected findings from a longitudinal study of young women.тАЭ Sexual orientation and mental health: Examining identity and development in lesbian, gay, and bisexual people (2005): 73тАУ94.

[95] Technical Expert Meeting discussion, July 24, 2013.

[96] For example, see Ponce NA et al., тАЬThe Effects of Unequal Access to Health Insurance for Same-Sex Couples in California,тАЭ Health Affairs (Project Hope) 29, no. 8 (August 2010): 1539тАУ48. doi:10.1377/hlthaff.2009.0583.

[97] Clift and Kirby, тАЬHealth Care Access and Perceptions of Provider Care among Individuals in Same-sex Couples.тАЭ

[98] Technical Expert Meeting discussion (July 24, 2013)

[99] The basic question is тАЬDo you think of yourself as lesbian or gay; straight, that is, not gay; bi sexual; something else; donтАЩt know. Follow up questions probe the meaning of the last two responses. тАЬCollecting Sexual Orientation and Gender Identity Data in Electronic Health Records - Workshop Summary - Institute of Medicine,тАЭ accessed February 28, 2013, http://iom.edu/Reports/2012/Collecting-Sexual-Orientation-and-Gender-Identity-Data-in-Electronic-Health-Records.aspx. Testimony of Kristen Miller, p. 32

[100] Technical Expert Meeting discussion, July 24, 2013.

[101] тАЬCollecting Sexual Orientation and Gender Identity Data in Electronic Health Records - Workshop Summary - Institute of Medicine,тАЭ accessed February 28, 2013, http://iom.edu/Reports/2012/Collecting-Sexual-Orientation-and-Gender-Identity-Data-in-Electronic-Health-Records.aspx. Testimony of Kristen Miller, p. 32.

[102] Interview with Snowdon.

[103] Interview with Landers.

[104] Ehrenfeld JM, тАЬIdentification of LGBT Patients & Health Disparities Using Electronic Health Records,тАЭ October 12, 2012, http://www.iom.edu/~/media/Files/Activity%20Files/SelectPops/LGBTdata/Ehrenfeld%20presentation.pdf.

[105] Technical Expert Meeting discussion, July 24, 2013.

[106] National Institute of Mental Health, A ParentтАЩs Guide to Autism Spectrum Disorder, 2011, http://www.nimh.nih.gov/health/publications/a-parents-guide-to-autism-spectrum-disorder/complete-index.shtml.

[107] Hendricks DR and Wehman P, тАЬTransition From School to Adulthood for Youth With Autism Spectrum Disorders Review and Recommendations,тАЭ Focus on Autism and Other Developmental Disabilities 24, no. 2 (2009): 77тАУ88. ┬а┬а┬а┬а┬а┬а┬а┬а┬а┬а┬а┬а┬а┬а┬а doi:10.1177/1088357608329827.

[108] National Institute of Mental Health, A ParentтАЩs Guide to Autism Spectrum Disorder.

[109] Centers for Disease Control and Prevention. Prevalence of Autism Spectrum DisordersтАФAutism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2008. MMWR. March 30, 2012/61(SS03);1-19, CDC.

[110] Technical Expert Meeting discussion, July 24, 2013.

[111] тАЬUnderstanding Rett Syndrome - About Rett Syndrome - International Rett Syndrome Foundation,тАЭ International Rett Syndrome Foundation, accessed February 28, 2013, http://www.rettsyndrome.org/understanding-rett-syndrome/about-rett-syndrome.

[112] тАЬAutism Society - AspergerтАЩs Syndrome,тАЭ Autism Society, accessed February 28, 2013, http://www.autism-society.org/about-autism/aspergers-syndrome/.

[113] Kaufmann WE, тАЬDSM-5: The New Diagnostic Criteria for Autism Spectrum DisordersтАЭ (presented at the 2012 Research Symposium - Autism Consortium, Boston, MA, October 24, 2012), http://www.autismconsortium.org/symposium-files/WalterKaufmannAC2012Symposium.pdf.

[114] Mrozek-Budzyn D, Kiełtyka A, and Majewska R, тАЬLack of Association between Measles-mumps-rubella Vaccination and Autism in Children: a Case-control Study,тАЭ The Pediatric Infectious Disease Journal 29, no. 5 (2010): 397тАУ400. doi:10.1097/INF.0b013e3181c40a8a.

[115] DeStefano F, et al., тАЬAge at First Measles-Mumps-Rubella Vaccination in Children with Autism and School-Matched Control Subjects: A Population-Based Study in Metropolitan Atlanta,тАЭ Pediatrics 113, no. 2 (February 1, 2004): 259тАУ66. doi:10.1542/peds.113.2.259.

[116] Price CS et al., тАЬPrenatal and Infant Exposure to Thimerosal from Vaccines and Immunoglobulins and Risk of Autism,тАЭ Pediatrics 126, no. 4 (October 2010): 656тАУ64. doi:10.1542/peds.2010-0309.

[117] Institute of Medicine, Immunization Safety Review: Vaccines and Autism (Washington, D.C: National Academies Press, 2004).

[118] Boyle CA and Boulet SL, тАЬHealth Care Use and Health and Functional Impact of Developmental Disabilities Among Us Children, 1997-2005,тАЭ Archives of Pediatrics & Adolescent Medicine 163, no. 1 (2009): 19тАУ26. doi:10.1001/archpediatrics.2008.506.

[119] Gurney JG, McPheeters ML, and Davis MM, тАЬParental Report of Health Conditions and Health Care Use among Children with and Without Autism: National Survey of ChildrenтАЩs Health,тАЭ Archives of Pediatrics & Adolescent Medicine 160, no. 8 (2006): 825тАУ30. doi:10.1001/archpedi.160.8.825.

[120] National Institute of Mental Health, A ParentтАЩs Guide to Autism Spectrum Disorder.

[121] Gurney, McPheeters, and Davis, тАЬParental Report of Health Conditions and Health Care Use Among Children with and Without Autism.тАЭ

[122] Kohane IS et al., тАЬThe Co-morbidity Burden of Children and Young Adults with Autism Spectrum Disorders,тАЭ PloS One 7, no. 4 (2012): e33224. doi:10.1371/journal.pone.0033224.

[123] Gurney, McPheeters, and Davis, тАЬParental Report of Health Conditions and Health Care Use Among Children with and Without Autism.тАЭ

[124] Croen LA et al., тАЬA Comparison of Health Care Utilization and Costs of Children with and Without Autism Spectrum Disorders in a Large Group-model Health Plan,тАЭ Pediatrics 118, no. 4 (October 2006): e1203тАУ11. doi:10.1542/peds.2006-0127.

[125] Langworthy-Lam KS, Aman MG, and Van Bourgondien ME, тАЬPrevalence and Patterns of Use of Psychoactive Medicines in Individuals with Autism in the Autism Society of North Carolina,тАЭ Journal of Child and Adolescent Psychopharmacology 12, no. 4 (2002): 311тАУ21. doi:10.1089/104454602762599853.

[126] Kogan MD et al., тАЬA National Profile of the Health Care Experiences and Family Impact of Autism Spectrum Disorder Among Children in the United States, 2005-2006,тАЭ Pediatrics 122, no. 6 (December 2008): e1149тАУ58. doi:10.1542/peds.2008-1057.

[127] Kogan MD et al., тАЬPrevalence of Parent-reported Diagnosis of Autism Spectrum Disorder Among Children in the US, 2007,тАЭ Pediatrics 124, no. 5 (2009): 1395тАУ1403. doi:10.1542/peds.2009-1522.

[128] Eaves LC and Ho HH, тАЬYoung Adult Outcome of Autism Spectrum Disorders,тАЭ Journal of Autism and Developmental Disorders 38, no. 4 (2008): 739тАУ47. doi:10.1007/s10803-007-0441-x.

[129] Cooley WC and Sagerman PJ, тАЬSupporting the Health Care Transition from Adolescence to Adulthood in the Medical Home,тАЭ Pediatrics 128, no. 1 (2011): 182тАУ200. doi:10.1542/peds.2011-0969.

[130] Honeycutt T and Wittenburg T, Identifying Transition-Age Youth with Disabilities Using Existing Surveys (Mathematica Policy Research, July 10, 2012), http://www.mathematica-mpr.com/publications/PDFs/disability/transition_age_youth_disabilities.pdf.

[131] Hendricks and Wehman, тАЬTransition From School to Adulthood for Youth With Autism Spectrum Disorders.тАЭ

[132] Interviews with Lotstein and Lounds Taylor.

[133] Prichard L et al., Transitioning Teens with Autism Spectrum Disorders, Guide (Autism Consortium), accessed February 28, 2013, http://www.autismconsortium.org/attachments/Autism_Consortium_Reference_Guide_FINAL.pdf.

[134] Billstedt E, Gillberg IC, and Gillberg C, тАЬAspects of Quality of Life in Adults Diagnosed with Autism in Childhood: a Population-based Study,тАЭ Autism: The International Journal of Research and Practice 15, no. 1 (2011): 7тАУ20. doi:10.1177/1362361309346066.

[135] Prichard et al., Transitioning Teens with Autism Spectrum Disorders.

[136] More attention has been paid to the obstacles faced by youth with ASDs as they transition to college, work, and independent living. There is a body of literature around how schools should help students with ASD make this transition and federal measures in place to make sure schools plan for this transition because many students with ASDs receive special education services. (Hendricks and Wehman, тАЬTransition From School to Adulthood for Youth With Autism Spectrum Disorders.тАЭ)

[137] Cheak-Zamora NC, et al., тАЬDisparities in Transition Planning for Youth with Autism Spectrum Disorder.тАЭ Pediatrics (February 11, 2013). doi:10.1542/peds.2012-1572.

[138] Lotstein DS et al., тАЬTransition Planning for Youth With Special Health Care Needs: Results From the National Survey of Children With Special Health Care Needs,тАЭ Pediatrics 115, no. 6 (June 1, 2005): 1562тАУ68. doi:10.1542/peds.2004-1262.

[139] Carbone PS et al., тАЬThe Medical Home for Children with Autism Spectrum Disorders: Parent and Pediatrician Perspectives,тАЭ Journal of Autism and Developmental Disorders 40, no. 3 (2010): 317тАУ24. doi:10.1007/s10803-009-0874-5.

[140] Livermore G et al., Disability Data in National Surveys, Office of the Assistant Secretary for Planning and Evaluation (Mathematica Policy Research: Office of the Assistant Secretary for Planning and Evaluation, August 25, 2011), http://www.aspe.hhs.gov/daltcp/reports/2011/DDNatlSur.shtml.

[141] Ibid.

[142] Technical Expert Meeting discussion, July 24, 2013.

[143] Technical Expert Meeting discussion, July 24, 2013.

[144] Technical Expert Meeting discussion, July 24, 2013.

[145] Centers for Disease Control, Prevalence of Autism Spectrum DisordersтАФAutism and Developmental Disabilities Monitoring Network, United States, 2006, Surveillance Summaries, December 18, 2009. http://www.cdc.gov/mmwr/preview/mmwrhtml/ss5810a1.htm.

[146] Reijneveld SA et al., тАЬPsychosocial Problems among Immigrant and Non-immigrant Children--Ethnicity Plays a Role in Their Occurrence and Identification,тАЭ European Child & Adolescent Psychiatry 14, no. 3 (2005): 145тАУ52. doi:10.1007/s00787-005-0454-y.

[147] Mandell DS and Novak M, тАЬThe Role of Culture in FamiliesтАЩ Treatment Decisions for Children with Autism Spectrum Disorders,тАЭ Mental Retardation and Developmental Disabilities Research Reviews 11, no. 2 (2005): 110тАУ15. doi:10.1002/mrdd.20061.

[148] Begeer S et al., тАЬUnderdiagnosis and Referral Bias of Autism in Ethnic Minorities,тАЭ Journal of Autism and Developmental Disorders 39, no. 1 (2009): 142тАУ48. doi:10.1007/s10803-008-0611-5.

[149] Honeycutt and Wittenburg, Identifying Transition-Age Youth with Disabilities Using Existing Surveys.

[150] Cromartie J and Bucholtz S, тАЬDefining the тАШRuralтАЩ in Rural America,тАЭ Amber Waves, June 2008, http://webarchives.cdlib.org/wayback.public/UERS_ag_1/20111129061030/http://ers.usda.gov/AmberWaves/June08/Features/RuralAmerica.htm.

[151] Crosby RA et al., Rural Populations and Health: Determinants, Disparities, and Solutions (John Wiley & Sons, 2012).

[152] Hart LG, Larson EH, and Lishner DM, тАЬRural Definitions for Health Policy and Research,тАЭ American Journal of Public Health 95, no. 7 (2005): 1149тАУ55. doi:10.2105/AJPH.2004.042432.

[153] Jones C et al., тАЬHealth Status and Health Care Access of Farm and Rural Populations,тАЭ Economic Information Bulletin (USDA Economic Research Service, August 2009). http://www.ers.usda.gov/publications/eib-economic-information-bulletin/eib57.aspx.

[154] тАЬUSDA Economic Research Service - State Data,тАЭ February 26, 2013, http://www.ers.usda.gov/data-products/state-fact-sheets/state-data.aspx?StateFIPS=00.

[155] Committee on The Future of Rural Health Care, Quality through Collaboration: The Future of Rural Health Care (Washington, DC: The National Academies Press, 2005).

[156] тАЬUSDA Economic Research Service - Definitions of Food Security,тАЭ accessed May 6, 2013, http://www.ers.usda.gov/topics/food-nutrition-assistance/food-security-in-the-us/definitions-of-food-security.aspx#.UYf_obWcfts.

[157] Halverson J et al., Patterns of Food Insecurity, Food Availability, and Health Outcomes among Rural and Urban Counties (West Virginia Rural Health Research Center, 2011). http://ask.hrsa.gov/detail_materials.cfm?ProdID=4700&ReferringID=4628.

[158] Bennett, KJ, Olatsi B, and Probst J, Health Disparities: A Rural-Urban Chartbook (South Carolina Rural Health Research Center, June 2008). http://rhr.sph.sc.edu/report/%287-3%29%20Health%20Disparities%20A%20Rural%20Urban%20Chartbook%20-%20Distribution%20Copy.pdf.

[159] Jones et al., Health Status and Health Care Access of Farm and Rural Populations.

[160] Crosby et al., Rural Populations and Health.

[161] Health Resources and Services Administration, Mental Health and Rural America: 1994-2005 (Office of Rural Health Policy, 2005), ftp://ftp.hrsa.gov/ruralhealth/RuralMentalHealth.pdf.

[162] Ibid.

[163] Lambert D, Gale JA, and Hartley D, тАЬSubstance Abuse by Youth and Young Adults in Rural America,тАЭ Journal of Rural Health: Official Journal of the American Rural Health Association and the National Rural Health Care Association 24, no. 3 (2008): 221тАУ28. doi:10.1111/j.1748-0361.2008.00162.x.

[164] Grant KM et al., тАЬMethamphetamine Use in Rural Midwesterners,тАЭ American Journal on Addictions/ American Academy of Psychiatrists in Alcoholism and Addictions 16, no. 2 (2007): 79тАУ84. doi:10.1080/10550490601184159.

[165] Roundtable on Environmental Health Sciences, Research, and Medicine, Institute of Medicine, Rebuilding the Unity of Health and the Environment in Rural America: Workshop Summary (Washington, DC: National Academies Press, 2006).

[166] Hendryx M, Fedorko E, and Halverson J, тАЬPollution Sources and Mortality Rates Across Rural-urban Areas in the United States,тАЭ The Journal of Rural Health: Official Journal of the American Rural Health Association and the National Rural Health Care Association 26, no. 4 (2010): 383тАУ91. doi:10.1111/j.1748-0361.2010.00305.x.

[167] Persily CA,. Beane JS, and Rice MG, тАЬEnvironmental Workforce Characteristics in the Rural Public Health Sector.тАЭ Policy Brief (West Virginia Rural Health Research Center, December 2011). http://publichealth.hsc.wvu.edu/wvrhrc/docs/2010_persily_policy_brief.pdf.

[168] Jones et al., Health Status and Health Care Access of Farm and Rural Populations.

[169] Roundtable on Environmental Health Sciences, Research, and Medicine, and Institute of Medicine, Rebuilding the Unity of Health and the Environment in Rural America.

[170] Ibid.

[171] Ziller EC et al., Health Insurance Coverage in Rural America, Chartbook (Kaiser Commission on Medicaid and the Uninsured, September 2003). http://www.kff.org/uninsured/upload/Health-Insurance-Coverage-in-Rural-America-PDF.pdf.

[172] Bensley L, тАЬResults of BRFSS Analysis,тАЭ October 2012.

[173] Brock Martin A et al., Rural Border Health Chartbook. (South Carolina Rural Health Research Center, January 2013). http://rhr.sph.sc.edu/report/SCRHRC%20Rural%20Border%20Health.pdf.

[174] Roundtable on Environmental Health Sciences, Research, and Medicine, and Institute of Medicine, Rebuilding the Unity of Health and the Environment in Rural America.

[175] Health Resources and Services Administration, тАЬMental Health and Rural America: 1994тАУ2005.тАЭ

[176] Hart, Larson, and Lishner, тАЬRural Definitions for Health Policy and Research.тАЭ

[177] Technical Expert Meeting discussion, July 24, 2013.

[178] Committee on The Future of Rural Health Care, Quality through Collaboration.

[179] McEllistrem-Evenson A, Informing Rural Primary Care Workforce Policy: What Does the Evidence Tell Us? A Review of Rural Health Research Center Literature, 2000тАУ2010 (Rural Health Research Gateway, April 2011). http://www.ruralcenter.org/minnesota-web-recruitment/resources/informing-rural-primary-care-workforce-policy-what-does-evidence.

[180] Mikacevich S and Stensland J, Serving Rural Medicare Beneficiaries (MedPac, June 2012). http://medpac.gov/chapters/Jun12_Ch05.pdf.

[181] Ibid.

[182] NORC, Understanding the Impact of Health IT in Underserved Communities and Those with Health Disparities. CCHC Case Study.

[183] Ibid. Tele-psychiatry case study.

[184] DesRoches CM et al., тАЬSmall, Nonteaching, and Rural Hospitals Continue to Be Slow in Adopting Electronic Health Record Systems,тАЭ Health Affairs 31, no. 5 (2012): 1092тАУ99. doi:10.1377/hlthaff.2012.0153.

[185] Colias M, тАЬRural Areas Still Not Wired for Digital Health Care,тАЭ H&HN, September 2012, http://www.hhnmag.com/hhnmag/jsp/articledisplay.jsp?dcrpath=HHNMAG/Article/data/09SEP2012/0912HHN_Inbox_Telemedicine&domain=HHNMAG.

[186] тАЬFCC Chairman Announces Up to $400 Million Healthcare Connect Fund to Create & Expand Telemedicine Networks, Increase Access to Medical Specialists, FCC Will Begin Accepting Applications for the Healthcare Connect Fund Beginning Late Summer of 2013,тАЭ press release, accessed February 28, 2013, http://www.fcc.gov/document/fcc-chairman-announces-400-million-healthcare-connect-fund.

[187] CMS, Payment Adjustment and Hardship Exceptions Tipsheet for Eligible Hospitals and CAHs. August 2012. http://www.cms.gov/Regulations-and-Guidance/Legislation/EHRIncentivePrograms/Downloads/PaymentAdj_HardshipExcepTipsheetforHospitals.pdf.

[188] DesRoches et al., тАЬSmall, Nonteaching, and Rural Hospitals Continue to Be Slow.тАЭ

[189] National Rural Health Association, Electronic Health Record Implementation and Meaningful Use Adoption in Rural Hospitals and Physician Clinics. Policy Brief. 2012. http://www.ruralhealthweb.org/go/left/policy-and-advocacy/policy-documents-and-statements/issue-papers-and-policy-briefs/.

[190] Morgan PA et al., тАЬMissing in Action: Care by Physician Assistants and Nurse Practitioners in National Health Surveys,тАЭ Health Services Research 42, no. 5 (2007): 2022тАУ37. doi:10.1111/j.1475-6773.2007.00700.x.

[191] Grumbach K et al., тАЬThe Challenge of Defining and Counting Generalist Physicians: An Analysis of Physician Masterfile Data.тАЭ American Journal of Public Health 85, no. 10 (1995): 1402тАУ07.

[192] Randolph R et al., тАЬDesignating Places and Populations as Medically Underserved: A Proposal for a New Approach.тАЭ Journal of Health Care for the Poor and Underserved 18, no. 3 (2007): 575. doi:10.1353/hpu.2007.0065.

[193] Trude L, тАЬStandardizing the Patchwork of Data on the U.S. Health Workforce - Health Workforce News,тАЭ Health Workforce News, April 12, 2011. http://www.hwic.org/newsletter/2011/04/standardizing-health-workforce-data/.

[194] For example, see Hendryx, Fedorko, and Halverson, тАЬPollution Sources and Mortality Rates Across Rural-urban Areas in the United StatesтАЭ; Lambert, Gale, and Hartley, тАЬSubstance Abuse by Youth and Young Adults in Rural America.тАЭ

[195] See NCHS Research Data Center site for more details: http://www.cdc.gov/rdc/B2AccessMod/Acs230.htm.

[196] тАЬRefugees in Iowa Introduce Unprecedented Language Barriers in Rural Communities,тАЭ Friends of Refugees, accessed March 26, 2013, http://forefugees.com/2012/08/05/refugees-in-iowa-introduce-unprecedented-language-barriers-in-rural-communities/.

[197] Hart, Larson, and Lishner, тАЬRural Definitions for Health Policy and Research.тАЭ

[198] Cromartie and Bucholtz, тАЬDefining the тАШRuralтАЩ in Rural America.тАЭ

[199] Ibid.

[200] Ibid.

[201] Marpsat M and Razafindratsima N, тАЬSurvey Methods for Hard-to-Reach Populations: Introduction to the Special IssueтАЭ Methodological Innovations Online5, no. 2 (2010): 3тАУ16.

[202] Gunther Eysenbach and Jeremy Wyatt. тАЬUsing the Internet for Surveys and Health Research.тАЭ Journal of Medical Internet Research 4, no. 2 (2002): e13. doi:10.2196/jmir.4.2.e13.

[203] Van Gelder MMHJ, Bretveld RW, and Roeleveld N. тАЬWeb-Based Questionnaires: The Future in Epidemiology?тАЭ American Journal of Epidemiology 172, no. 11 (2010): 1292тАУ98. doi:10.1093/aje/kwq291.

[204] Federal Register Notices, тАЬProposed Project: 2013 National Survey on Drug Use and Health (NSDUH) Dress Rehearsal (OMB No. 0930тАУ0334) тАФ Revision.тАЭ 78, No. 41, Friday, March 1, 2013. http://www.gpo.gov/fdsys/pkg/FR-2013-03-01/pdf/2013-04756.pdf .

[205] Hart et al., тАЬRural Definitions for Health Policy and Research.тАЭ

[206] Shortliffe EH and Barnett GO. тАЬBiomedical Data: Their Acquisition, Storage, and Use.тАЭ In Biomedical Informatics, edited by Shortliffe EH and Cimino JJ. Health Informatics. Springer New York, 2006. http://link.springer.com/chapter/10.1007/0-387-36278-9_2; Gilbert EH, Lowenstein SR, Koziol-McLain J, Barta DC, and Steiner J. тАЬChart Reviews in Emergency Medicine Research: Where Are the Methods?тАЭ Annals of Emergency Medicine, 1996; 27(3): 305тАУ08; Goldberg SI, Niemierko A, and Turchin A. тАЬAnalysis of Data Errors in Clinical Research Databases.тАЭ AMIA Annual Symposium Proceedings 2008: 242тАУ46; Reisch, LM, Fosse JF, Beverly K, Yu O, Barlow WE, Harris EL, Rolnick S, Barton MB, Geiger AM, Herrington LJ, Greene SM, Gletcher SW, and Elmore JG. тАЬTraining, Quality Assurance, and Assessment of Medical Record Abstraction in a Multisite Study.тАЭ American Journal of Epidemiology, 2003; 157(6): 546тАУ51.

[207] Olsen L, Aisner D, and McGinnis JM, eds. Roundtable on Evidence-Based Medicine, The Learning Healthcare System: Workshop Summary (IOM Roundtable on Evidence-Based Medicine), The National Academies Press (2007) http://www.nap.edu/catalog.php?record_id=11903

[208] Miller E. тАЬThe National Center for Health StatisticsтАЩ Linked Data Files: Resources for Research and Policy.тАЭ Presented June 25, 2013 at AcademyHealth Annual Research Meeting, Baltimore, Maryland; Andrews R. тАЬClinically-Enhanced Statewide Hospital Discharge Data: Practical Experience and Potential Value.тАЭ Presented June 23, 2013 at AcademyHealth Annual Research Meeting; Baltimore, Maryland; Steiner C, тАЬThe Healthcare Cost and Utilization Project (HCUP): Linked Data Enhancements and Improved Analytic Capacity,тАЭ April 10, 2013.

[209] Institute of Medicine. тАЬKnowing What Works in Health Care: A Roadmap for the Nation.тАЭ Consensus Report, January 24, 2008. http://www.iom.edu/Reports/2008/Knowing-What-Works-in-Health-Care-A-Roadmap-for-the-Nation.aspx.

[210] Hoeffel EM, Rastogi S, Kim MO and Shahid H. тАЬThe Asian Population: 2010.тАЭ 2010 Census Briefs, March 2012. http://www.census.gov/prod/cen2010/briefs/c2010br-11.pdf.

[211] Islam NS, Khan S, Kwon S, Jang D, Ro M, and Trinh-Shevrin C. тАЬMethodological Issues in the Collection, Analysis, and Reporting of Granular Data in Asian American Populations: Historical Challenges and Potential Solutions.тАЭ Journal of Health Care for the Poor and Underserved, 2010; 21(4): 1354тАУ1381.

[212] Islam NS, Khan S, Kwon S, Jang D, Ro M, and Trinh-Shevrin C. тАЬMethodological Issues in the Collection, Analysis, and Reporting of Granular Data in Asian American Populations: Historical Challenges and Potential Solutions.тАЭ Journal of Health Care for the Poor and Underserved, 2010; 21(4): 1354тАУ1381.

[213] Palo Alto Medical Foundation. тАЬThe Pan Asian Cohort Study.тАЭ PAMF website, accessed July 15, 2013. http://www.pamf.org/pacs/. A similar pattern can be seen among women.

[214] American Cancer Society, тАЬCancer Facts & Figures 2013,тАЭ accessed February 28, 2013, http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc-036845.pdf.

[215] Institute of Medicine. тАЬThe Health of Lesbian, Gay, Bisexual, and Transgender People.тАЭ March 31, 2011. http://www.iom.edu/Reports/2011/The-Health-of-Lesbian-Gay-Bisexual-and-Transgender-People.aspx

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[223] Honeycutt T and Wittenburg T. тАЬIdentifying Transition-Age Youth with Disabilities Using Existing Surveys.тАЭ Mathematica Policy Research, July 10, 2012. http://www.mathematica-mpr.com/publications/PDFs/disability/transition_age_youth_disabilities.pdf.

[224] More attention has been paid to the obstacles faced by youth with ASDs as they transition to college, work, and independent living. There is a body of literature around how schools should help students with ASD make this transition and federal measures in place to make sure schools plan for this transition because many students with ASDs receive special education services. Hendricks DR and Wehman P. тАЬTransition from School to Adulthood for Youth with Autism Spectrum Disorders Review and Recommendations.тАЭ Focus on Autism and Other Developmental Disabilities, 2009; 24(2):77-88.

[225] Bennett KJ, Olatsi B, and Probst J. тАЬHealth Disparities: A Rural-Urban Chartbook.тАЭ South Carolina Rural Health Research Center, June 2008, http://rhr.sph.sc.edu/report/%287-3%29%20Health%20Disparities%20A%20Rural%20Urban%20Chartbook%20-%20Distribution%20Copy.pdf.

[226] Jones C, Parker T, Ahearn M, Mishra AK and Variyam J. тАЬHealth Status and Health Care Access of Farm and Rural Populations.тАЭ USDA Economic Research Service. Economic Information Bulletin No. (EIB-57). August 2009. http://www.ers.usda.gov/publications/eib-economic-information-bulletin/eib57.aspx#.UeRQ5o2cfts

[227] Murphy J. тАЬONC Program Update.тАЭ Presented at NCVHS Meeting, June 19, 2013. http://www.ncvhs.hhs.gov/130619p1.pdf

It should be noted that providers can receive payment through either the Medicare or the Medicaid payment meaningful use incentive program. To receive payment, providers must meet meaningful use (MU) criteria which are defined through the regulatory process and intended to facilitate improvement in quality and efficiency. There are three stages of meaningful use MU in these programs with increasingly challenging requirements and this data includes only the first payment, which is also the largest one. In the Medicaid program, providers may receive their first incentive payment for adoption, implementation, or upgrade (AIU) of an EHR system in recognition that Medicaid intensive providers are less likely to already have had an EHR due to resource limitations and may have a more difficult time raising the capital to finance or purchase a system on their own. It is not clear whether those who received payments for AIU or stage 1 will continue on to future stages. For more information these EHR incentive programs, see http://www.cms.gov/Regulations-and-Guidance/Legislation/EHRIncentivePrograms/Basics.html.

[228] For an overview of HITECH programs and how they are designed to work together see: Gold M, McLaughlin C, Devers K, Berenson B, and Bovbjerg RR. тАЬObtaining ProvidersтАЩ тАЬBuy-InтАЭ and Establishing Effective Means of Health Information Exchange Will Be Critical to HITECHтАЩs Success.тАЭ Health Affairs, 2012; 31(3):514-526.

[229] DesRoches CM, Campbell EG, Rao SR, et al. тАЬElectronic health records in ambulatory careтАФa national survey of physicians.тАЭ New England Journal of Medicine, 359(1):50-60, 2008.

[230] Hsiao CJ, Jha AK, King J, Patel V, Furukawa MF, and Mostashari F. тАЬOffice-Based Physicians Are Responding To Incentives And Assistance By Adopting And Using Electronic Health Records.тАЭ Health Affairs. July 2013; Epub ahead of print.

[231] DesRoches CM, Campbell EG, Rao SR, et al. тАЬElectronic health records in ambulatory careтАФa national survey of physicians.тАЭ New England Journal of Medicine, 359(1):50-60, 2008.

[232] The expert panel disagreed on the need to include physician notes and nursing assessments to classify a hospital as having a basic system, so two definitions of Basic EHR were developed. Since Meaningful Use does not require clinician notes, adoption of at least Basic EHR is based on the definition of Basic without clinician notes.

[233] DesRoches CM, Charles D, Furukawa MF, Joshi MS, Kralovec P, Mostashari F, Worzala C, and Jha AK. тАЬAdoption Of Electronic Health Records Grows Rapidly, But Fewer Than Half Of US Hospitals Had At Least A Basic System In 2012.тАЭ Health Affairs, 2013; 32(8):1-8.

[234] Charles D, Furukawa M, and Hufstader M. тАЬElectronic Health Record Systems and Intent to Attest to Meaningful Use among Non-Federal Acute Care Hospitals in the United States: 2008-2011.тАЭ ONC Data Brief no. 1 Washington, DC: Office of the National Coordinator for Health IT. February 2012.

[235] Nakamura MM, Ferris TG, DesRoches CM, and Jha AK. тАЬElectronic health record adoption by childrenтАЩs hospitals in the United States.тАЭ Archives of Pediatrics and Adolescent Medicine, 2010; 164(12): 1145-51.

[236] Jha AK, DesRoches CM, Kralovec PD, and Joshi MS. тАЬA Progress Report on Electronic Health Records in U.S. hospitals.тАЭ Health Affairs, 2010; 29(10): 1951тАУ7.

[237] Furukawa MF, Patel V, Charles D et al. тАЬHospital Electronic Health Information Exchange Grew Substantially in 2008тАУ2012.тАЭ Health Affairs, August 2013; 32(8):1346-1354.

[238] Nakamura, et al, тАЬElectronic Health Record Adoption by ChildrenтАЩs Hospitals in the United States.тАЭ

[239] McGinn CA, Grenier S, Duplantie J, et al. тАЬComparison of user groupsтАЩ perspectives of barriers and facilitators to implementing electronic health records: a systematic review.тАЭ BMC Medicine, 9(46): 2011.

[240] Moiduddin A and Stromberg S. Health information technology in CaliforniaтАЩs rural practices: assessing the benefits and barriers. Oakland, CA: California Healthcare Foundation, 2009; Bahensky JA, Jaana M, and Ward MM. тАЬHealth care information technology in rural America: electronic medical record adoption status in meeting the national agenda.тАЭ Journal of Rural Health, 24(2): 101тАУ5, 2008; Bahensky JA, Ward MM, Nyarko K, and Li P. тАЬHIT Implementation in Critical Access Hospitals: Extent of Implementation and Business Strategies Supporting IT Use.тАЭ Journal of Medical Systems, 35(4): 599-607, 2011.

[241] Institute of Medicine. тАЬKey Capabilities of an Electronic Health Record System: Letter Report.тАЭ July 31, 2003. http://www.iom.edu/Reports/2003/Key-Capabilities-of-an-Electronic-Health-Record-System.aspx.

[242] Ford EW, Menachemi N, Huerta TR, and Yu F. тАЬHospital IT Adoption Strategies Associated with Implementation Success: Implications for Achieving Meaningful Use.тАЭ Journal of Healthcare Management / American College of Healthcare Executives, 2010; 55(3): 175тАУ88; discussion 188тАУ89.

[244] NORC at the University of Chicago. тАЬHoward University Hospital Diabetes Treatment CenterтАФUsing Multi-modal Health IT Tools to Improve Quality and Delivery of Care in an Urban Setting.тАЭ June 2012, http://www.healthit.gov/system/files/pdf/HowardCaseStudyReport.pdf.

[245] Goel MS, Brown TL, Williams A, Hasnain-Wynia R, Thompson JA, and Baker DW. тАЬDisparities in Enrollment and Use of an Electronic Patient Portal.тАЭ Journal of General Internal Medicine, 2011; 26(10): 1112тАУ1116.

[246] Interviews with Savitz, Callahan, and Ehrenfeld

[247] Technical Expert Panel Discussion, July 24, 2013

[248] Interviews with Callahan, Ehrenfeld

[249] Interview with Walker

[250] Webster PS and Sampangi S. тАЬReport on Data Improvement Pilot on Patient Ethnicity and Race (DIPPER): Pilot Design and Proposed Voluntary Standard.тАЭ Rhode Island Medical Journal, January 2013.

[251] Mearian L. тАЬHow Big Data Will Save Your Life,тАЭ Computer World, April 25, 2013, http://www.computerworld.com/s/article/9238593/How_big_data_will_save_your_life.

[252] Interviews with Savitz, Elliott, and Hornbrook

[253] Decker SL, Jamoom EW, Sisk JE. Physicians in non-primary care and small practices and those age 55 and older lag in adopting electronic health record systems. Health Affairs. April 2012. 10.1377/hlthaff.2011.1121;

DesRoches CM, et al. Small, nonteaching, and rural hospitals continue to be slow in adopting electronic health record systems. Health Affairs2012;31;10.1377/hlthaff.2012.0153;

Stronger Economies Together (SET), a USDA Rural Development program found 63 percent of rural health providers did not have EHR as of 2012 (USDA website)

[254] DesRoches CM, Worzala C, and Bates S. тАЬSome Hospitals Are Falling Behind in Meeting тАШMeaningful UseтАЩ Criteria and Could Be Vulnerable to Penalties in 2015.тАЭ Health Affairs. 2013; 32(8): 1355тАУ60.

[255] Interview with Savitz.

[256] Interview with Hornbrook.

[257] Interview with Savitz.

[258] Interview with Luft.

[259] Interview with Croen.

[260] Interview with Hornbrook.

[261] Fiks AG, Grundmeier RW, Margolis B et al. тАЬComparative Effectiveness Research Using the Electronic Medical Record: An Emerging Area of Investigation in Pediatric Primary Care.тАЭ Journal of Pediatrics 2012; 160(5): 719тАУ24.

[262] American Academy of Pediatrics Website, тАЬAbout ePROS.тАЭ Accessed September 19, 2013. http://www2.aap.org/pros/epros/; and interview with Wasserman and Fiks.

[263] Interview with Savitz.

[264] Interview with Hornbrook.

[265] Interview with Wasserman and Fiks.

[266] University of California, Davis, Health System. No date. тАЬPatient Questions for Demographics.тАЭ

[267] Institute of Medicine. тАЬCollecting Sexual Orientation and Gender Identity Data in Electronic Health Records - Workshop Summary - Institute of Medicine.тАЭ December 20, 2012. http://iom.edu/Reports/2012/Collecting-Sexual-Orientation-and-Gender-Identity-Data-in-Electronic-Health-Records.aspx.

[268] Technical Expert Panel discussion, July 24, 2013

[269] Technical Expert Panel discussion, July 24, 2013; and Kaelber D. тАЬClinical Research Informatics.тАЭ Presentation to Case Western Reserve University, 2013.

[270] Powell J and Buchan I. тАЬElectronic Health Records Should Support Clinical Research,тАЭ Journal of Medical Internet Research 7, no. 1 (March 14, 2005), doi:10.2196/jmir.7.1.e4.

[271] Lohr K, and Steinwachs D. Health services research: An evolving definition of the field. Health Services Research, 2002; 37(1):15-17.

[272] Agency for Healthcare Research and Quality. тАЬWhat is Comparative Effectiveness Research?тАЭ AHRQ website, accessed July 10, 2013. http://effectivehealthcare.ahrq.gov/index.cfm/what-is-comparative-effectiveness-research1/

[273] Mearian L. тАЬHow Big Data Will Save Your Life,тАЭ Computer World, April 25, 2013, http://www.computerworld.com/s/article/9238593/How_big_data_will_save_your_life.

[274] Kaelber DC, Foster W, Gilder J, Lover TE, and Jain AK. тАЬPatient Characteristics Associated with Venous Thromboembolic Events: a Cohort Study Using Pooled Electronic Health Record Data.тАЭ Journal of the American Medical Informatics Association. 2012; 19(6):965-72.

[275] Weissberg J. тАЬUse of Large System Databases: Cox-2 Inhibitors.тАЭ Kaiser Permanente, Presentation, The Learning Healthcare System, Institute of MedicineтАФRoundtable on EBM. May, 2006. http://www.iom.edu/~/media/Files/Activity%20Files/Quality/VSRT/S1bWeissbergReadOnly.pdf.

[276] Technical Expert Panel discussion, July 24, 2013

[277] Interviews with Croen and Savitz.

[278] Interview with Croen.

[279] Interview with Holve.

[280] Interview with Wasserman and Fiks.

[281] Interviews with Glasgow and West and Schilling.

[282] Interview with West and Schilling.

[283] Interview with Croen.

[284] Interview with Califf.

[285] Interview with Hornbrook.

[286] Interviews with Croen and Hornbrook.

[287] Technical Expert Panel discussion, July 24, 2013.

[288] Interviews with Savitz and Luft.

[289] Interview with Walker.

[290] Interview with Capponi.

[291] Technical Expert Panel discussion, July 24, 2013.

[292] Interview with Savitz.

[293] Interview with Walker.

[294] Interview with Capponi.

[295] Interview with Hornbrook.

[296] Bellin E, Fletcher DD, Geberer N, Islam S, and Srivastava N. тАЬDemocratizing Information Creation from Health Care Data for Quality Improvement, Research, and Education-the Montefiore Medical Center Experience,тАЭ Academic Medicine: Journal of the Association of American Medical Colleges, 2010; 85(8): 1362тАУ1368.

[297] Kern LM, Malhotra S, Barron Y, Quaresimo J, Dhopeshwarkar R, Pichardo M, Edwards AM, and Kaushal R. тАЬAccuracy of Electronically Reported тАШMeaningful UseтАЩ Clinical Quality Measures: a Cross-sectional Study.тАЭ Annals of Internal Medicine, 2013; 158(2): 77тАУ83.

[298] Parsons A, McCullough C, Wang J and Shih S. тАЬValidity of Electronic Health Record-derived Quality Measurement for Performance Monitoring.тАЭ Journal of the American Medical Informatics Association, 2012; 19(4): 604тАУ609.

[299] Hornbrook MC, Whitlock EP, Berg CJ, Callaghan WM, Bachman DJ, Gold R, Bruce FC, Dietz PM, and Williams SB. тАЬDevelopment of an Algorithm to Identify Pregnancy Episodes in an Integrated Health Care Delivery System.тАЭ Health Services Research, 2007; 42(2): 908тАУ927.

[300] Interview with Luft.

[301] Interview with Savitz.

[302] Jensen PB, Jensen LJ, and Brunak S. тАЬMining electronic health records: towards better research applications and clinical care.тАЭ Nature Reviews, Genetics, 2012; 13:295-405.

[303] Ehrenfeld J. тАЬIdentification of LGBT Patients and Health Disparities: Using Electronic Health Records.тАЭ Presented at the Sexual Orientation and Gender Identity Data Collection in Electronic Health Records: A Workshop, Institute of Medicine, October 12, 2012.

[304] Stanfill MH, Williams M, Fenton SH, Jenders RA, and Hersh WR. тАЬA Systematic Literature Review of Automated Clinical Coding and Classification Systems.тАЭ Journal of the American Medical Informatics Association: JAMIA, 2010; 17(6): 646тАУ651.

[305] Chan KS, Fowles JB, and Weiner JP. тАЬReview: Electronic Health Records and the Reliability and Validity of Quality Measures: a Review of the Literature.тАЭ Medical Care Research and Review, 2010: 67(5): 503тАУ527.

[306] Stanfill MH, Williams M, Fenton SH, Jenders RA, and Hersh WR. тАЬA Systematic Literature Review of Automated Clinical Coding and Classification Systems.тАЭ Journal of the American Medical Informatics Association: JAMIA, 2010; 17(6): 646тАУ651.

[307] Interview with Walker.

[308] Interview with Franklin.

[309] Interview with Hornbrook.

[310] Chan KS, Fowles JB, and Weiner JP. тАЬReview: Electronic Health Records and the Reliability and Validity of Quality Measures: a Review of the Literature.тАЭ Medical Care Research and Review, 2010: 67(5): 503тАУ527.

[311] Interview with Franklin.

[312] Jaret P. тАЬMining Electronic Records for Revealing Health Data.тАЭ New York Times, January 14, 2013. http://www.nytimes.com/2013/01/15/health/mining-electronic-records-for-revealing-health-data.html.

[313] Interview with Hornbrook.

[314] Technical Expert Panel discussion, July 24, 2013.

[315] Interviews with Hornbrook and Califf.

[316] Technical Expert Panel discussion, July 24, 2013.

[317] Interview with Elliott.

[318] Interview with Wasserman and Fiks.

[319] Technical Expert Panel discussion, July 24, 2013.

[320] Benson B. тАЬLegacy EHR System and Data Lookup a Thing of the Past.тАЭ HITECH Answers, accessed May 25, 2013, http://www.hitechanswers.net/legacy-ehr-system-data-lookup/.

[321] Interview with Elliott.

[322] Interview with Califf.

[323] Technical Expert Panel discussion, July 24, 2013.

[324] McGraw D and Leiter A. тАЬLegal and Policy Challenges to Secondary Uses of Information from Electronic Clinical Health Records.тАЭ AcademyHealth, 2012.

Kern LM, Malhotra S, Barron Y, Quaresimo J, Dhopeshwarkar R, Pichardo M, Edwards AM, and Kaushal R. тАЬAccuracy of Electronically Reported тАШMeaningful UseтАЩ Clinical Quality Measures: a Cross-sectional Study.тАЭ Annals of Internal Medicine, 2013; 158(2): 77тАУ83.

[325] Selker H, Grossman C, Adams A, et al. тАЬThe Common Rule and Continuous Improvement in Health Care: A Learning Health System Perspective.тАЭ Institute of Medicine Discussion Paper, October 1, 2011. http://www.iom.edu/Global/Perspectives/2012/CommonRule.aspx; Nass SJ, Levit LA, Gostin LO. Beyond the HIPAA Privacy Rule. Washington DC, National Academies Press, 2009.

[326] HHS Press Office. тАЬNew rule protects patient privacy, secures health information.тАЭ News Release, January 17, 2013. http://www.hhs.gov/news/press/2013pres/01/20130117b.html

[327] DeGraw D and Leiter A. тАЬLegal and Policy Challenges to Secondary Uses of Information from Electronic Clinical Health Records.тАЭ AcademyHealth, 2012.

[328] Jensen PB, Jensen LJ, and Brunak S. тАЬMining electronic health records: towards better research applications and clinical care.тАЭ Nature Reviews, Genetics, 2012; 13:295-405.

[329] Obel N, Omland LH, Kronborg G, Larsen CS, Pedersen C, Pedersen G, S├╕rensen HT, Gerstoft J. тАЬImpact of non-HIV and HIV Risk Factors on Survival in HIV-infected Patients on HAART: a Population-based Nationwide Cohort Study.тАЭ PloS One, 2011; 6(7).

[330] Clark S and Weale A. тАЬInformation Governance in Health: An Analysis of the Social Values Involved in Data Linkage Studies.тАЭ Economic and Social Research Council, 2011.

[331] Hoffman S and Podgurski A. тАЬBalancing Privacy, Autonomy, and Scientific Needs in Electronic Health Records Research.тАЭ Social Science Research Network Scholarly Paper, September 7, 2011. http://papers.ssrn.com/abstract=1923187.

[332] Ingelfinger JR and Drazen JM. тАЬRegistry Research and Medical Privacy.тАЭ The New England Journal of Medicine, 2004; 350(14): 1452тАУ1453.

[333] Felt U, Bister MD, Strassnig M, and Wagner U. тАЬRefusing the Information Paradigm: Informed Consent, Medical Research, and Patient Participation.тАЭ Health (London, England: 1997), 2009; 13 (1): 87тАУ106.

[334] Federal Trade Commission. тАЬFair Information Practices Principles.тАЭ http://www.ftc.gov/reports/privacy3/fairinfo.shtm, accessed August 25, 2013.

[335] Hoffman S and Podgurski A. тАЬBalancing Privacy, Autonomy, and Scientific Needs in Electronic Health Records Research.тАЭ Social Science Research Network Scholarly Paper, September 7, 2011. http://papers.ssrn.com/abstract=1923187.

[336] Noble S, Donovan J, Turner E, Metcalfe C, Lane A, Rowlands MA, Neal D, Hamdy F, Ben-Shlomo Y, and Martin R. тАЬFeasibility and Cost of Obtaining Informed Consent for Essential Review of Medical Records in Large-scale Health Services Research.тАЭ Journal of Health Services Research & Policy, 2009; 14(2): 77тАУ81.

[337] Grande D, Mitra N, Shah A, Wan F, and Asch D. тАЬA National Survey of Patient Preferences about Secondary Uses of Electronic Health Information.тАЭ Presented June 25, 2013 at AcademyHealth Annual Research Meeting, Baltimore, Maryland.

[338] Kho ME, Duffett M, Willison DJ, Cook DJ, Brouwers MC. тАЬWritten Informed Consent and Selection Bias in Observational Studies Using Medical Records: Systematic Review.тАЭ BMJ, 2009; 338: b866.

[339] U.S. Food and Drug Administration. тАЬShould Your Child be in a Clinical Trial?тАЭ http://www.fda.gov/forconsumers/consumerupdates/ucm048699.htm, accessed August 25, 2013.

[340] McGraw D and Leiter A. тАЬA Policy and Technology Framework for Using Clinical Data to Improve Quality.тАЭ Houston Journal of Law & Policy. 2012; 137-167.

[341] Interview with Elliott.

[342] Interview with Walker.

[343] Interview with Croen.

[344] Interview with Ehrenfeld.

[345] Interview with Capponi.

[346] Interviews with Savitz and Callahan.

[347] McGraw D and Leiter A. тАЬA Policy and Technology Framework for Using Clinical Data to Improve Quality.тАЭ Houston Journal of Law & Policy. 2012; 137-167.

[348] Luft H. тАЬEmbedded Research: Doing Research on the Organization Within Which You Work.тАЭ Presented June 2013 at AcademyHealth Annual Research Meeting, Baltimore, Maryland.

[349] Snyder C. тАЬConsiderations for Using Patient-Reported Outcomes in Clinical Practice: A Case Study.тАЭ Presented June 2013 at AcademyHealth Annual Research Meeting, Baltimore, Maryland.

[350] Sabharwal R, Holve E, Rein A, and Segal C. тАЬApproaches to Using Protected Health Information (PHI) for Patient-Centered Outcomes Research (PCOR): Regulatory Requirements, De-identification Strategies, and Policy.тАЭ Issue Briefs and Reports, March 1, 2012, http://repository.academyhealth.org/edm_briefs/1.

[351] Multicenter Perioperative Outcomes Group website. http://mpog.med.umich.edu/, accessed August 26, 2013.

[352] McGraw D. тАЬData Governance Challenges & Opportunities in Health Services Research.тАЭ Presented June 24, 2013 at AcademyHealth Annual Research Meeting, Baltimore, Maryland.

[353] Rosenbaum S. тАЬData Governance and Stewardship: Designing Data Stewardship Entities and Advancing Data Access.тАЭ Health Services Research, 2010; 45(5 Pt 2): 1442тАУ1455.

[354] Safran C, Bloomrosen M, Hammond WE, Labkoff S, Markel-Fox S, Tang PC, and Detmer DE. тАЬToward a National Framework for the Secondary Use of Health Data: An American Medical Informatics Association White Paper.тАЭ Journal of the American Medical Informatics Association: JAMIA, 2007; 14(1): 1тАУ9.

[355] Interview with Capponi.

[356] Interview with Elliott.

[357] Interview with Walker.

[358] McGraw D and Leiter A. тАЬA Policy and Technology Framework for Using Clinical Data to Improve Quality.тАЭ Houston Journal of Law & Policy. 2012; 137-167.

[359] Sabharwal R, Holve E, Rein A, and Segal C. тАЬApproaches to Using Protected Health Information (PHI) for Patient-Centered Outcomes Research (PCOR): Regulatory Requirements, De-identification Strategies, and Policy.тАЭ Issue Briefs and Reports, March 1, 2012, http://repository.academyhealth.org/edm_briefs/1.

[360] Technical Expert Panel discussion, July 24, 2013.

[361] Sabharwal R, Holve E, Rein A, and Segal C. тАЬApproaches to Using Protected Health Information (PHI) for Patient-Centered Outcomes Research (PCOR): Regulatory Requirements, De-identification Strategies, and Policy.тАЭ Issue Briefs and Reports, March 1, 2012, http://repository.academyhealth.org/edm_briefs/1.

[362] Pace WD, Cifuentes M, Valuck RJ, Staton EW, Brandt EC, and West DR. тАЬAn Electronic Practice-Based Network for Observational Comparative Effectiveness Research.тАЭ Annals of Internal Medicine, 2009; 151(5): 338тАУ340.

[363] American Academy of Pediatrics Website, тАЬAbout ePROS.тАЭ Accessed September 19, 2013. http://www2.aap.org/pros/epros/

[364] Sabharwal R, Holve E, Rein A, and Segal C. тАЬApproaches to Using Protected Health Information (PHI) for Patient-Centered Outcomes Research (PCOR): Regulatory Requirements, De-identification Strategies, and Policy.тАЭ Issue Briefs and Reports, March 1, 2012, http://repository.academyhealth.org/edm_briefs/1.

[365] Brown J, Syat B, Lane K and Platt R. тАЬBlueprint for a Distributed Research Network to Conduct Population Studies and Safety Surveillance.тАЭ Effective Health Care Program Research Reports Number 27. Agency for Healthcare Research and Quality, June 2010. http://effectivehealthcare.ahrq.gov/reports/final.cfm.

[366] Merrill M. тАЬPilot Project for Distributed Research Network Will Use EHRs,тАЭ August 12, 2008, http://www.healthcareitnews.com/news/pilot-project-distributed-research-network-will-use-ehrs.

[367] Randhawa GS and Slutsky JR. тАЬBuilding Sustainable Multi-functional Prospective Electronic Clinical Data Systems.тАЭ Medical Care, 2012; 50 Suppl: S3тАУ6.

[368] Technical Expert Panel discussion, July 24, 2013.

[369] Massachusetts eHealth Institute. тАЬPopMedNet: Distributed Data Network.тАЭ http://mehi.masstech.org/what-we-do/hie/mdphnet/popmednet, accessed August 25, 2013.

[370] Holve E, Segal C, and Lopez MH. тАЬOpportunities and Challenges for Comparative Effectiveness Research (CER) With Electronic Clinical Data.тАЭ Medical Care, 2012; 50 Suppl: S11тАУS18.

[371] McGraw D. тАЬData Governance Challenges & Opportunities in Health Services Research.тАЭ Presented June 24, 2013 at AcademyHealth Annual Research Meeting, Baltimore, Maryland.

[372] Technical Expert Panel discussion, July 24, 2013.

[373] Segal C and Holve E. тАЬEmerging Data Resources, Tools, and Publications from the ARRA-CER Infrastructure Awards.тАЭ Presented June 2013 at Academy Health Annual Research Meeting, Baltimore, Maryland.

[374] Patient-Centered Outcomes Research Institute. тАЬImproving Our National Infrastructure to Conduct Comparative Effectiveness Research.тАЭ PCORI website, accessed July 10, 2013. http://www.pcori.org/funding-opportunities/improving-our-national-infrastructure-to-conduct-comparative-effectiveness-research/

[375] Luft HS. тАЬCommentary: Protecting Human Subjects and Their Data in Multi-site Research.тАЭ Medical Care, 2012; 50 Suppl: S74тАУ76.

[376] Interview with Holve.

[377] Kahn MG, Raebel MA, Glanz JM, Riedlinger K, and Stein JF. тАЬA Pragmatic Framework for Single-site and Multisite Data Quality Assessment in Electronic Health Record-based Clinical Research.тАЭ Medical Care, 2012; 50 Suppl: S21тАУ29.

[378] Conn J. тАЬMore Than 300 Vendors Share Ambulatory Care EHR Market.тАЭ ModernHealthcare, October 24, 2012, http://www.modernhealthcare.com/article/20121024/NEWS/310249954.

[379] Dreyer N. тАЬInterfacing Registries with EHRs.тАЭ Presented at AHRQ Annual Conference. September 14, 2009. http://www.ahrq.gov/news/events/conference/2009/dreyer/index.html.

[380] Eastwood B. тАЬ6 Big Data Analytics Use Cases for Healthcare IT.тАЭ CIO.com, April 23, 2013. http://www.cio.com/article/732160/6_Big_Data_Analytics_Use_Cases_for_Healthcare_IT.

[382] Allen T. тАЬBetter Care through Sharing Electronic Medical Records,тАЭ Health Affairs Blog, September 4, 2012, http://healthaffairs.org/blog/2012/09/04/better-care-through-sharing-electronic-medical-records/.

[383] Interviews with Callahan and Walker.

[384] Interview with Glasgow.

[385] Interview with Hornbrook.

[386] Interview with Califf.

[387] Interview with Capponi.

[388] Interview with Holve.

[389] Interview with Hornbrook.

[390] Interview with West and Schilling.

[391] Interview with McBurnie.

[392] Technical Expert Panel discussion, July 24, 2013.

[393] Adler-Milstein J, Bates DW, and Jha AK. тАЬU.S. Regional Health Information Organizations: Progress and Challenges.тАЭ Health Affairs, 2009; 28(2):483тАУ492.

[394] Aligning Forces for Quality. тАЬReform In Action: Can Publicly Reporting the Performance of Health Care Providers Spur Quality Improvement?тАЭ April 2012. http://www.rwjf.org/content/dam/farm/reports/issue_briefs/2012/rwjf400299

[395] Bradley CJ, Penberthy L, Devers KJ, and Holden DJ. тАЬHealth Services Research and Data Linkages: Issues, Methods, and Directions for the Future.тАЭ Health Services Research, 2010; 45(5p2): 1468тАУ1488.

[396] Centers for Disease Control. тАЬCDC Features - Providing Quality Cancer Data,тАЭ accessed May 25, 2013, http://www.cdc.gov/Features/CancerRegistries/.

[397] Hornbrook MC, Fishman PA, Ritzwoller DP, Elston-Lafata J, OтАЩKeeffe-Rosetti MC, and Salloum RG. тАЬWhen Does an Episode of Care for Cancer Begin?тАЭ Medical Care, 2013; 51(4): 324тАУ329.

[398] Field K, Kosmider S, Johns J, Farrugia H, Hastie I, Croxford M, Chapman M, Harold M, Murigu N, and Gibbs P. тАЬLinking Data from Hospital and Cancer Registry Databases: Should This Be Standard Practice?тАЭ Internal Medicine Journal, 2010; 40(8): 566тАУ573.

[399] Jain SH, Conway PH, and Berwick DM, тАЬA Public-private Strategy to Advance the Use of Clinical Registries.тАЭ Anesthesiology, 2012; 117(2): 227тАУ229.

[400] Bohensky MA, Jolley D, Sundararajan V, Evans S, Pilcher DV, Scott I and Brand CA. тАЬData Linkage: A Powerful Research Tool with Potential Problems.тАЭ BMC Health Services Research, 2010; 10(1): 346.

[401] Belmont J and McGuire AL. тАЬThe Futility of Genomic Counseling: Essential Role of Electronic Health Records.тАЭ Genome Medicine, 2009; 1(5): 48.

[402] Belmont J and McGuire AL. тАЬThe Futility of Genomic Counseling: Essential Role of Electronic Health Records.тАЭ Genome Medicine, 2009; 1(5): 48.

[403] Jensen PB, Jensen LJ, and Brunak S. тАЬMining electronic health records: towards better research applications and clinical care.тАЭ Nature Reviews, Genetics, 2012; 13:295-405.

[404] Jensen PB, Jensen LJ, and Brunak S. тАЬMining electronic health records: towards better research applications and clinical care.тАЭ Nature Reviews, Genetics, 2012; 13:295-405.

[405] Centers for Disease Control and Prevention Website, тАЬNational Health and Nutrition Examination Survey: How to Access the Genetic Data Sets.тАЭ Access September 19, 2013. http://www.cdc.gov/nchs/nhanes/genetics/genetic_access.htm

[406] Hamilton J. тАЬMatching DNA with Medical Records to Crack Disease and Aging.тАЭ NPR, All Things Considered, November 19, 2012. http://www.npr.org/blogs/health/2012/11/19/165498842/matching-dna-with-medical-records-to-crack-disease-and-aging.

[407] Trinidad SB, Fullerton SM, Ludman EJ, Jarvik GP, Larson EB, and Burke W. тАЬResearch Ethics. Research Practice and Participant Preferences: The Growing Gulf.тАЭ Science, 2011; 331(6015): 287тАУ288.

[408] Lunshof JD, Chadwick R, Vorhaus DB, and Church GM. тАЬFrom Genetic Privacy to Open Consent,тАЭ Nature Review Genetics, 2008; 9(5): 406тАУ411.

[409] Steiner C, тАЬThe Healthcare Cost and Utilization Project (HCUP): Linked Data Enhancements and Improved Analytic Capacity,тАЭ April 10, 2013.

[410] Andrews R. тАЬClinically-Enhanced Statewide Hospital Discharge Data: Practical Experience and Potential Value.тАЭ Presented June 23, 2013 at AcademyHealth Annual Research Meeting; Baltimore, Maryland.

[411] Technical Expert Panel discussion, July 24, 2013.

[412] NORC at the University of Chicago. тАЬPatient Care Management and Rewards ProgramтАФPromoting and Tracking Wellness Behaviors within the Context of an Existing Case-management Program.тАЭ June 2012, http://www.healthit.gov/system/files/pdf/AEH_CaseStudyReport.pdf.

[413] Vayena E, Mastroianni A, and Kahn J. тАЬCaught in the Web: Informed Consent for Online Health Research.тАЭ Science Translational Medicine, 2013; 5(173): 173fs6тАУ173fs6.

[414] Interview with Savitz.

[415] Interview with Croen.

[416] Interview with Hornbrook.

[417] Interview with Savitz.

[418] Waidmann TA, Ormond BA, and Spillman BC. Potential Savings through Prevention of Avoidable Chronic Illness among CalPERS State Active Members. Urban Institute, April 2012. http://www.urban.org/publications/412550.html

[419] Katz N, Andrews R, Zingmond D, and Weiser T. тАЬStatewide Initiatives to Improve Race Ethnicity and Language Data: Three Unique Approaches.тАЭ Presented at Council of State and Territorial Epidemiologists annual conference, Pasadena, CA, June 10, 2013. https://cste.confex.com/cste/2013/webprogram/Paper1519.html

[420] Center for Medicare and Medicaid Services, тАЬSocial and Behavioral Domains and Measures for Domains for Electronic Clinical Quality Measures (eCOM).тАЭ Accessed September 19, 2013. https://www.fbo.gov/index?s=opportunity&mode=form&id=77b0f00d5508ca8cef522072de3c5b0a&tab=core&_cview=0; and тАЬCMS Orders Study on Including Social, Behavioral Health Data in EHRs.тАЭ iHealthBeat, September 16, 2013.┬а┬а┬а┬а┬а http://www.ihealthbeat.org/articles/2013/9/16/cms-commissions-study-on-including-social-behavioral-health-in-ehrs

[421] Arispe IE. тАЬThe National Center for Health Statistics: Adapting to meet new data needs.тАЭ Presented June 2013 at AcademyHealth Annual Research Meeting; Baltimore, Maryland.

[422] Interview with Luft.

[423] Interview with Felix.

[424] Interview with Califf.

[425] Interview with Walker.

[426] Interview with McBurnie.

[427] Interview with Ehrenfeld.

[428] Interview with Hornbrook.

[429] Interview with Luft.

[430] Interview with Luft.

[431] Interview with Luft.

[432] Technical Expert Panel discussion, July 24, 2013.

[433] Technical Expert Panel discussion, July 24, 2013.

[434] Interview with Croen.

[435] Interview with Chang Weir.

[436] Interview with Chang Weir.

[437] Interview with Croen.

[438] Interview with Hornbrook.

[439] Interview with Hornbrook.

[440] Interview with Chang Weir.

[441] Interviews with Chang Weir, Hornbrook, and Ehrenfeld.

[442] Interview with Ehrenfeld.

[443] Interview with Capponi.

[444] Interview with McBurnie.

[445] Interviews with Walker and Elliott.

[446] Interview with Hornbrook.

[447] Interviews with Ehrenfeld, Croen, and Hornbrook.

[448] Interviews with Ehrenfeld and Chang Weir.

[449] Interview with McBurnie.

[450] Interview with West and Schilling.

[451] Interview with McBurnie.

[452] Interview with Savitz.

[453] Interview with West and Schilling.

[454] Technical Expert Panel discussion, July 24, 2013.

[455] McGraw D and Leiter A. тАЬA Policy and Technology Framework for Using Clinical Data to Improve Quality.тАЭ Houston Journal of Law & Policy. 2012; 137-167.

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