The Feasibility of Using Electronic Health Data for Research on Small Populations. References in Part II

09/01/2013

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

2.       Adler-Milstein J, Bates DW, and Jha AK. тАЬOperational Health Information Exchanges Show Substantial Growth, but Long-Term Funding Remains a Concern.тАЭ Health Affairs, 2013; 32(8):1тАУ7.

3.       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/.

4.       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.

5.       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.

6.       American Medical Informatics Association. Letter to ONC Re: 45 CFR Part 171, Nationwide Health Information Network: Conditions for Trusted Exchange Request for Information (RFI), 2012.

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

8.       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/

9.       Arispe IE. тАЬThe National Center for Health Statistics: Adapting to Meet New Data Needs.тАЭ Presented at AcademyHealth Annual Research Meeting; Baltimore, MD, June 2013.

10.    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, 2008; 24(2): 101тАУ5.

11.    Bahensky JA, Ward MM, Nyarko K, and Li P. тАЬHIT Implementation in Critical Access Hospitals: Extent ofImplementation and Business Strategies Supporting IT Use.тАЭ Journal of Medical Systems, 2011; 35(4): 599тАУ607.

12.    Bellin E, Fletcher DD, Geberer N, Islam S, and Srivastava N. тАЬDemocratizing Information Creation from Health Care Data for Quality Improvement, Research, and EducationтАУthe Montefiore Medical Center Experience.тАЭ Academic Medicine: Journal of the Association of American Medical Colleges, 2010; 85(8): 1362тАУ68.

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

14.    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.

15.    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/.

16.    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.

17.    Boyle CA, and Boulet SL. тАЬHealth Care Use and Health and Functional Impact of Developmental Disabilities among US Children, 1997тАУ2005.тАЭ Archives of Pediatrics & Adolescent Medicine, 2009; 163(1): 19тАУ26.

18.    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): 1468тАУ88.

19.    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 27. Agency for Healthcare Research and Quality, June 2010. http://effectivehealthcare.ahrq.gov/reports/final.cfm.

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

21.    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): 503тАУ27.

22.    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: 2008тАУ2011.тАЭ ONC Data Brief 1. Office of the National Coordinator for Health IT, 2012.

23.    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.

24.    Cohn SP. тАЬUpdate to Privacy Laws and Regulations Required to Accommodate NHIN Data Sharing Practices.тАЭ Accessed June 21, 2007. http://www.ncvhs.hhs.gov/071221lt.pdf.

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

26.    Croen LA, Najjar DV, Ray GT, Lotspeich L, and Bernal P. 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, 2006; 118(4): e1203тАУ11.

27.    Decker SL, Jamoom EW, and 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.

28.    Department of Health and Human Services. тАЬNew Rule Protects Patient Privacy, Secures Health Information.тАЭ News release, January 17, 2013. http://www.hhs.gov/news/press/2013pres/01/20130117b.html

29.    DesRoches CM, Campbell EG, Rao SR, Donelan K, Ferris TG, Jha A, Kaushal R, Levy DE, Rosenbaum S, Shields AE, and Blumenthal D. тАЬElectronic Health Records in Ambulatory CareтАФA National Survey of Physicians.тАЭ New England Journal of Medicine, 2008; 359(1): 50тАУ60.

30.    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): 1тАУ8.

31.    DesRoches CM, et al. тАЬSmall, Nonteaching, and Rural Hospitals Continue to Be Slow in Adopting Electronic Health Record Systems.тАЭ Health Affairs, 2012; 31. 10.1377/hlthaff.2012.0153.

32.    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.

33.    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.

34.    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.

35.    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.

36.    Federal Trade Commission. тАЬFair Information Practices Principles.тАЭ Accessed August 25, 2013. http://www.ftc.gov/reports/privacy3/fairinfo.shtm.

37.    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.

38.    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): 566тАУ73.

39.    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.

40.    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.

41.    Furukawa MF, Patel V, Charles D, et al. тАЬHospital Electronic Health Information Exchange Grew Substantially in 2008тАУ2012.тАЭ Health Affairs, 2013; 32(8): 1346тАУ54.

42.    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): 305тАУ308.

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

44.    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): 1112тАУ16.

45.    Gold M, McLaughlin C, Devers K, Berenson B, and Bovbjerg RR. тАЬObtaining ProvidersтАЩ тАШBuy-InтАЩ and Establishing Effective Means of Health Information Exchange Will Be Critical to HITECHтАЩs Success.тАЭ Health Affairs, 2012; 31(3): 514тАУ26.

46.    Goldberg SI, Niemierko A, and Turchin A. тАЬAnalysis of Data Errors in Clinical Research Databases.тАЭ AMIA Annual Symposium Proceedings, 2008: 242тАУ46.

47.    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 at AcademyHealth annual research meeting, Baltimore, MD, June 25, 2013.

48.    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, 2006; 160(8): 825тАУ30.

49.    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.

50.    HealthIT.gov FAQs. Accessed May 24, 2013. http://www.healthit.gov/providers-professionals/faqs/what- information-does-electronic-health-record-ehr-contain.

51.    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): 77тАУ88.

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

53.    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.

54.    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.

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

56.    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): 908тАУ27.

57.    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): 324тАУ29.

58.    Hsiao CJ, and Hing E. тАЬUse and Characteristics of Electronic Health Record Systems Among Office-Based Physician Practices: United States, 2011тАУ2012.тАЭ NCHS Data Brief 111. Hyattsville, MD: National Center for Health Statistics, 2012.

59.    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.

60.    Ingelfinger JR, and Drazen JM. тАЬRegistry Research and Medical Privacy.тАЭ New England Journal of Medicine, 2004; 350(14): 1452тАУ53.

61.    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.

62.    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

63.    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.

64.    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.

65.    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): 1354тАУ81.

66.    Jain SH, Conway PH, and Berwick DM. тАЬA Public-Private Strategy to Advance the Use of Clinical Registries.тАЭ Anesthesiology, 2012; 117(2): 227тАУ29.

67.    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.

68.    Jha AK, DesRoches CM, Campbell EG, Donelan K, Rao SR, Ferris TG, Shields A, Rosenbaum S, and Blumenthal D. тАЬUse of Electronic Health Records in U.S. Hospitals.тАЭ New England Journal of Medicine, 2009; 360(16): 1628тАУ38.

69.    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): 1951тАУ57.

70.    Jones C, Parker T, Ahearn M, Mishra AK, and Variyam J. тАЬHealth Status and Health Care Access of Farm and Rural Populations.тАЭ Economic Information Bulletin EIB-57. USDA Economic Research Service, 2009. http://www.ers.usda.gov/publications/eib-economic-information-bulletin/eib57.aspx#.UeRQ5o2cfts.

71.    Kaelber D. тАЬClinical Research Informatics.тАЭ Presentation to Case Western Reserve University, 2013.

72.    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): 965тАУ72.

73.    Kahn MG. тАЬData Model Considerations for Clinical Effectiveness Researchers.тАЭ Medical Care, 2012; 50(7 Supplement 1): S60тАУS67.

74.    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.

75.    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.

76.    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.

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

78.    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, 2002; 12(4): 311тАУ21.

79.    Lohr K, and Steinwachs D. тАЬHealth Services Research: An Evolving Definition of the Field.тАЭ Health Services Research, 2002; 37(1):15-17.

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

81.    Luft H. тАЬEmbedded Research: Doing Research on the Organization within Which You Work.тАЭ Presented at AcademyHealth annual research meeting, Baltimore, MD, June 2013.

82.    Lunshof JD, Chadwick R, Vorhaus DB, and Church GM. тАЬFrom Genetic Privacy to Open Consent.тАЭ Nature Review Genetics, 2008; 9(5): 406тАУ11.

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

84.    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.

85.    McGinn CA, Grenier S, Duplantie J, Shaw N, Sicotte C, Mathieu L, Yvan L, L├йgar├й F, and Gagnon M. тАЬComparison of User GroupsтАЩ Perspectives of Barriers and Facilitators to Implementing Electronic Health Records: A Systematic Review.тАЭ BMC Medicine, 2011; 9(46): 1тАУ10.

86.    McGraw D. тАЬData Governance Challenges and Opportunities in Health Services Research.тАЭ Presented at AcademyHealth annual research meeting, Baltimore, MD, June 24, 2013.

87.    ┬аMcGraw D, and Leiter A. тАЬA Policy and Technology Framework for Using Clinical Data to Improve Quality.тАЭ Houston Journal of Law & Policy, 2012; 137тАУ67.

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

89.    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.

90.    Miller E. тАЬThe National Center for Health StatisticsтАЩ Linked Data Files: Resources for Research and Policy.тАЭ Presented at AcademyHealth annual research meeting, Baltimore, MD, June 25, 2013.

91.    Moiduddin A, and Stromberg S. тАЬHealth Information Technology in CaliforniaтАЩs Rural Practices: Assessing the Benefits and Barriers.тАЭ Oakland, CA: California Healthcare Foundation, 2009.

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

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

94.    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): 1145тАУ51.

95.    Nass SJ, Levit LA, and Gostin LO. Beyond the HIPAA Privacy Rule. Washington, DC: National Academies Press, 2009.

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

97.    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.

98.    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.

99.    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.

100.Obel N, Omland LH, Kronborg G, Larsen CS, Pedersen C, Pedersen G, S├╕rensen HT, and 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).

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

102.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): 338тАУ40.

103.Palo Alto Medical Foundation. тАЬThe Pan Asian Cohort Study.тАЭ PAMF website, accessed July 15, 2013. http://www.pamf.org/pacs/.

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

105.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/.

106.Powell J, and Buchan I. тАЬElectronic Health Records Should Support Clinical Research,тАЭ Journal of Medical Internet Research, 2005; 7(1). doi:10.2196/jmir.7.1.e4.

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

108.Regenstrief Institute. тАЬRegenstrief Institute Data Core.тАЭ Regenstrief Institute website, accessed July 15, 2013. http://www.regenstrief.org/centers/research-resources/data-core/

109.Reisch, LM, Fosse JS, 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.

110.Rosenbaum S. тАЬData Governance and Stewardship: Designing Data Stewardship Entities and Advancing Data Access.тАЭ Health Services Research, 2010; 45(5 Pt 2): 1442тАУ55.

111.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 brief. 2012. http://repository.academyhealth.org/edm_briefs/1.

112.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.

113.Segal C, and Holve E. тАЬEmerging Data Resources, Tools, and Publications from the ARRA-CER Infrastructure Awards.тАЭ Presented at AcademyHealth annual research meeting, Baltimore, MD, June 2013.

114.Selker H, Grossman C, Adams A, et al. тАЬThe Common Rule and Continuous Improvement in Health Care: A Learning Health System Perspective.тАЭ Discussion Paper. Institute of Medicine, 2011. http://www.iom.edu/Global/Perspectives/2012/CommonRule.aspx.

115.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.

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

117.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): 646тАУ51.

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

119.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): 287тАУ88.

120.University of California, Davis, Health System. No date. тАЬPatient Questions for Demographics.тАЭ

121.U.S. Department of Agriculture, Stronger Economies Together (SET) program. USDA website, 2012.

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

123.Vayena E, Mastroianni A, and Kahn J. тАЬCaught in the Web: Informed Consent for Online Health Research.тАЭ Science Translational Medicine, 2013; 5(173): 173fs6.

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

125.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, 2013; January.

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

View full report

Preview
Download

"rpt_ehealthdata.pdf" (pdf, 1.99Mb)

Note: Documents in PDF format require the Adobe Acrobat Reader®. If you experience problems with PDF documents, please download the latest version of the Reader®