Shifting the Paradigm: Using HIV Surveillance Data as a Foundation for Improving HIV Care and Preventing HIV Infection
Article first published online: 8 JUL 2013
Published 2013. This article is a U.S. Government work and is in the public domain in the USA.
Volume 91, Issue 3, pages 558–603, September 2013
How to Cite
SWEENEY, P., GARDNER, L. I., BUCHACZ, K., GARLAND, P. M., MUGAVERO, M. J., BOSSHART, J. T., SHOUSE, R. L. and BERTOLLI, J. (2013), Shifting the Paradigm: Using HIV Surveillance Data as a Foundation for Improving HIV Care and Preventing HIV Infection. Milbank Quarterly, 91: 558–603. doi: 10.1111/milq.12018
- Issue published online: 13 SEP 2013
- Article first published online: 8 JUL 2013
- 2009. Race, Place and AIDS: The Role of Socioeconomic Context on Racial Disparities in Treatment and Survival in San Francisco. Social Science & Medicine 69(1):121–28. , , , , and .
- 2009. An Evidence-Based Review of Treatment-Related Determinants of Patients’ Nonadherence to HIV Medications. AIDS Patient Care and STDs 23:903–14. , and .
- 2006. Less Than 95% Adherence to Nonnucleoside Reverse-Transcriptase Inhibitor Therapy Can Lead to Viral Suppression. Clinical Infectious Diseases 43:939–41.
- 2000. Adherence to Protease Inhibitors, HIV-1 Viral Load, and Development of Drug Resistance in an Indigent Population. AIDS 14:357–66. , , , , , , , , and .
- 1989. Private Acts, Social Consequences: AIDS and the Politics of Public Health. New York: Free Press.
- 2013. Missed Connections: HIV-Infected Persons Never in Care. Public Health Reports 128(2):117–26. , , , , , and .
- 2012. Using HIV Surveillance Data to Monitor Missed Opportunities for Linkage and Engagement in HIV Medical Care. Open AIDS Journal 6(suppl. 1:M10):131–41. , , , , , , , , , , , , and , for the Never in Care Project.
- 2000. A Tale of Two Futures: HIV and Antiretroviral Therapy in San Francisco. Science 287(5453):650–54. , , and .
- 2007. The Promise of Outreach for Engaging and Retaining Out-of-Care Persons in HIV Medical Care. AIDS Patient Care and STDs 21(suppl. 1):S85–S91.
- 2007. HIV System Navigation: An Emerging Model to Improve HIV Care Access. AIDS Patient Care STDS 21(suppl. 1):S49–S58. , , and .
- HOPS Investigators. 2010. AIDS-Defining Opportunistic Illnesses in U.S. Patients, 1994–2007: A Cohort Study. AIDS 24:1549–59. , , , , , , , , and
- 2010. Rethinking Prevention of HIV Type 1 Infection. Clinical Infectious Diseases 51(6):725–31. , , and .
- 2000. Surveillance, Social Risk, and Symbolism: Framing the Analysis for Research and Policy. Journal of Acquired Immune Deficiency Syndromes 25:120–27.
- 2003. The Role of State Law in Protecting Human Subjects of Public Health Research and Practice. Journal of Law, Medicine & Ethics 31(4):654–62. , , , and .
- 2011. HIV-Infected Individuals Presumed to Not Be Receiving HIV Medical Care: A Surveillance Program Evaluation for Investigations and Referrals in Seattle, Washington State, USA. Journal of HIV/AIDS Surveillance Epidemiology 3(1):3. , , , , , and .
- 2007. Outreach Program Contacts: Do They Increase the Likelihood of Engagement and Retention in HIV Primary Care for Hard-to-Reach Patients? AIDS Patient Care STDS 21(suppl. 1):S59–S67. , , , , , , and .
- 2010. Use of Prescription-Based Measure of Antiretroviral Therapy Adherence to Predict Viral Rebound in HIV-Infected Individuals with Viral Suppression. HIV Medicine 11:216–24. , , , , , , , , and .
- CDC (Centers for Disease Control and Prevention). 1995. Essential Components of a Tuberculosis Prevention and Control Program. Morbidity and Mortality Recommendations and Reports 44(RR-11):1–17.
- CDC (Centers for Disease Control and Prevention). 2008. Recommendations for Partner Services Programs for HIV Infection, Syphilis, Gonorrhea, and Chlamydial Infection. Morbidity and Mortality Recommendations and Reports 57(RR09):1–63.
- CDC (Centers for Disease Control and Prevention). 2010. Sexually Transmitted Diseases Treatment Guidelines. Morbidity and Mortality Recommendations and Reports 59(RR12):1–110.
- CDC (Centers for Disease Control and Prevention). 2011a. CDC's New High-Impact Approach to HIV Prevention Funding for Health Departments. Available at http://www.cdc.gov/hiv/topics/funding/PS12-1201/resources/factsheet/pdf/foa-partner.pdf (accessed June 25, 2012).
- CDC (Centers for Disease Control and Prevention). 2011b. Data Security and Confidentiality Guidelines for HIV, Viral Hepatitis, Sexually Transmitted Disease, and Tuberculosis Programs Standards to Facilitate Sharing and Use of Surveillance Data for Public Health Action. Atlanta: U.S. Department of Health and Human Services.
- CDC (Centers for Disease Control and Prevention). 2011c. Meeting Summary: Consultation on Monitoring and Use of Laboratory Data Reported to HIV Surveillance, March 9–10, 2011. Available at http://www.cdc.gov/hiv/topics/surveillance/pdf/Using_HIV_Laboratory_Data.pdf (accessed December 14, 2012).
- CDC (Centers for Disease Control and Prevention). 2011d. Vital Signs: HIV Prevention through Care and Treatment—United States. Morbidity and Mortality Weekly Report 60(47):1618–23.
- CDC (Centers for Disease Control and Prevention). 2012a. Estimated HIV Incidence in the United States, 2007–2010. HIV Surveillance Supplemental Report 17(4). Available at http://www.cdc.gov/hiv/topics/surveillance/resources/reports/#supplemental (accessed January 24, 2013).
- CDC (Centers for Disease Control and Prevention). 2012b. Funding Opportunity Announcement: PS13-1302 National HIV Surveillance System (NHSS). Available at http://www.cdc.gov/hiv/topics/funding/PS13-1302/index.htm (accessed December 11, 2012).
- 2009. Tracking Diabetes: New York City's A1C Registry. The Milbank Quarterly 87(3):547–70. , , , , , , , and .
- 2002. Public Health Ethics: Mapping the Terrain. Journal of Law, Medicine & Ethics 30:170–78. , , , , , , , , , and .
- HPTN 052 Study Team. 2011. Prevention of HIV-1 Infection in Early Antiretroviral Therapy. New England Journal of Medicine 365(6):493–505. , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , and
- District of Columbia. 2010. Ryan White Grantees in Washington, DC: Recapture Blitz. Available at http://nationalqualitycenter.org/download_resource.cfm?fileID=36822 (accessed March 17, 2012).
- District of Columbia. 2011. Enhanced Comprehensive HIV Prevention Plan, Workbook 1. Available at http://www.cdc.gov/hiv/strategy/echpp/pdf/workbook_dc_1.pdf (accessed March 17, 2012).
- 2012a. How Health Departments Promote Retention in HIV Care. Medscape, September 9, 2012. Available at http://www.medscape.com/viewarticle/770953_print (accessed December 21, 2012).
- 2012b. Testing, Linkage and Retention in Care: Getting Control of the Cascade in Seattle. National Summit on HIV and Viral Hepatitis Diagnosis, Prevention, and Access to Care, Washington, DC, November 26–28.
- 2013. Surveillance-Based Outreach to Promote HIV Care Engagement and Antiretroviral Use: Results from the Pilot Phase of a Health Department Intervention [X-244]. Conference on Retroviruses and Opportunistic Infections, Atlanta, March 3–6. , , , , and .
- 2010. Letter to the Editor: Treatment as Prevention: Are HIV Clinic Patients Interested in Starting Antiretroviral Therapy to Decrease HIV Transmission? AIDS Patient Care and STDs 24(12):747–50. , , , and .
- 2012. Population-Based Metrics for the Timing of HIV Diagnosis, Engagement in HIV Care, and Virologic Suppression. AIDS 26:77–86. , , , , and .
- 2007. Back to the Future? Diabetes, HIV, and the Boundaries of Public Health. Journal of Health Politics, Policy and Law 32(4):561–93. , and .
- 2011. HIV Surveillance, Public Health, and Clinical Medicine — Will the Walls Come Tumbling Down? New England Journal of Medicine 365(8):685–87. , and .
- 2007. AIDS, Activism, and the Vicissitudes of Democratic Privacy. In Searching Eyes: Privacy, the State, and Disease Surveillance in America, chap. 7. Berkeley: University of California Press / New York: Milbank Memorial Fund. , , and .
- 2007. Public Goods, Private Data: HIV and the History, Ethics, and Uses of Identifiable Public Health Information. Public Health Reports 122(suppl. 1):7–15. , , , , , and .
- 2005. Applying Public Health Principles to the HIV Epidemic. New England Journal of Medicine 353(22):2397–2402. , , , and .
- 2011. The Spectrum of Engagement in HIV Care and Its Relevance to Test-and-Treat Strategies for Prevention of HIV Infection. Clinical Infectious Diseases 52(6):793–800. , , , , and .
- 2012. Linkages to Care for Newly Diagnosed Individuals Who Test HIV Positive in Nonprimary Care Settings. AIDS Patient Care and STDs 26(3):1–9. , , , , and .
- 2012. Retention in Care of Adults and Adolescents Living with HIV in 13 U.S. Areas. Journal of Acquired Immune Deficiency Syndromes 60(1):77–82. , , , , , and .
- 2012. Disparities among US States in HIV-Related Mortality in Persons with HIV Infection, 2001–2007. AIDS 26(1):95–103. , , , and .
- 2009. Most Positive HIV Western Blot Tests Do Not Diagnose New Cases in New York City: Implications for HIV Testing Programs. Journal of Acquired Immune Deficiency Syndromes 51(5):609–14. , , and .
- 2010. Life Expectancy after HIV Diagnosis Based on National HIV Surveillance Data from 25 States, United States. Journal of Acquired Immune Deficiency Syndromes 53(1):124–30. , , and .
- Health Resources and Services Administration. 2010. Eligible Individuals and Allowable Uses of Funds for Discretely Defined Categories of Services. Policy Notice 10-02. Available at http://hab.hrsa.gov/manageyourgrant/pinspals/eligible1002.html (accessed January 15, 2013).
- 2010. Ethics in Public Health Surveillance. In Principles and Practice of Public Health Surveillance, ed. L.M. Lee, S.M. Teutsch, S.B. Thacker, and M.E. St. Louis, 198–216. New York: Oxford University Press. , and .
- 2011. Implementation of an Innovative, Integrated Electronic Medical Record (EMR) and Public Health Information Exchange for HIV/AIDS. Journal of the American Medical Informatics Association 19(3):448–52. , , , , , , , , , and .
- 2006. The Legal and Ethical Fiction of “Pure” Confidentiality. American Journal of Bioethics 6:21–22.
- 2011. HIV Quality Performance Measures in a Large Integrated Health Care System. AIDS Patient Care and STDs 25(1):21–28. , , , , , , , , , , , , and .
- HER Study Group. 2002. A Prospective Study of Adherence and Viral Load in a Large Multi-Center Cohort of HIV-Infected Women. AIDS 16:2175–82. , , , , , , , , , and
- 2003. Changes in Partnerships and HIV Risk Behaviors after Partner Notification. Sexually Transmitted Diseases 30(1):83–88. , , , , , and .
- IOM (Institute of Medicine). 2002. The Future of the Public's Health in the 21st Century. Washington, DC: The National Academies Press. Available at http://www.nap.edu/openbook.php?record_id=10548&page=1 (accessed March 28, 2013).
- 2012. Delayed Entry into HIV Medical Care after HIV Diagnosis: Risk Factors and Research Methods. AIDS Care, February 9 (epub ahead of print). , , , , , and .
- 2010. Expanding Access to HAART: A Cost-Effective Approach for Treating and Preventing HIV. AIDS 24(12):1929–35. , , , , , , , and .
- 2013. Patterns and Correlates of Linkage to Appropriate HIV Care after HIV Diagnosis in the US Medicaid Population. Sexually Transmitted Diseases 40(1):18–25. , , , , , , , and .
- 2001. An Ethics Framework for Public Health. American Journal of Public Health 91:1776–82.
- 2003. Partner Notification for HIV and Syphilis: Effects on Sexual Behaviors and Relationship Stability. Sexually Transmitted Diseases 30(1):75–82. , , , , , , , , and .
- NA-ACCORD Investigators. 2009. Effect of Early versus Deferred Antiretroviral Therapy for HIV on Survival. New England Journal of Medicine 360:1815–26. , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , and
- 2007. Dictionary of Public Health. New York: Oxford University Press.
- 2012. Public Health Ethics Theory: Review and a Path to Convergence. Journal of Law, Medicine & Ethics 40(1):85–98.
- 2009. Ethical Collection, Storage, and Use of Public Health Data: A Proposal for a National Privacy Protection. JAMA 302(1):82–84. , and .
- 2007. The Effect of Adherence on the Association between Depressive Symptoms and Mortality among HIV-Infected Individuals First Initiating HAART. AIDS 21:1175–83. , , , , , , , and .
- 2008. Expanded Access to Highly Active Antiretroviral Therapy: A Potentially Powerful Strategy to Curb the Growth of the HIV Epidemic. Journal of Infectious Diseases 198(1):59–67. , , , , , , and .
- 2009. Racial and Sex Disparities in Life Expectancy Losses among HIV-Infected Persons in the United States: Impact of Risk Behavior, Late Initiation, and Early Discontinuation of Antiretroviral Therapy. Clinical Infectious Diseases 49(10):1570–78. , , , , , , , , , , , and .
- Louisiana Office of Public Health. 2012. Louisiana Public Health Information Exchange. Available at http://www.lsms.org/site/images/stories/LaPhie-Non-techincal%20Guide.pdf (accessed November 4, 2011).
- Louisiana State University. 2012. LSU Health. Available at http://www.lsuhospitals.org/ (accessed April 9, 2012).
- 2012. Improved HIV-Related Outcomes Associated with Implementation of a Novel Public Health Information Exchange. International Journal of Medical Informatics 81(10):e30–e38. , , , , , , , , , , and .
- 2012. Trust, Confidentiality, and the Acceptability of Sharing HIV-Related Patient Data: Lessons Learned from a Mixed Methods Study about Health Information Exchanges. Implementation Science 7(1):34. , , , , , , and .
- 2002. The Consistency of Adherence to Antiretroviral Therapy Predicts Biologic Outcomes for Human Immunodeficiency Virus-Infected Persons in Clinical Trials. Clinical Infectious Diseases 34:1115–21. , , , , and .
- 2010. Entry and Retention in Medical Care among HIV-Diagnosed Persons: A Meta-analysis. AIDS 24(17):2665–78. , , , and .
- 2012. Comparisons of Disparities and Risks of HIV Infection in Black and Other Men Who Have Sex with Men in Canada, UK, and USA: A Meta-analysis. The Lancet 380:341–48. , , , , , , , , , , and .
- 2010. Association of Highly Active Antiretroviral Therapy Coverage, Population Viral Load, and Yearly New HIV Diagnoses in British Columbia, Canada: A Population-Based Study. The Lancet 376(9740):532–39. , , , , , , , , , , and .
- 2011. Health Care System and Policy Factors Influencing Engagement in HIV Medical Care: Piecing Together the Fragments of a Fractured Health Care Delivery System. Clinical Infectious Diseases 52(S2):S238–46. , , and .
- 2008. Privacy and Public Health at Risk: Public Health Confidentiality in the Digital Age. American Journal of Public Health 98(5):793–801. , , , and .
- 2007. Retention in Care of Persons Newly Diagnosed with HIV: Outcomes of the Outreach Initiative. AIDS Patient Care STDs 21(suppl. 1):S40–S48. , , , , , and .
- 2007. Adherence to Nonnucleoside Reverse Transcriptase Inhibitor-Based HIV Therapy and Virologic Outcomes. Annals of Internal Medicine 146:564–73. , , , , , and .
- 2012. Projected Life Expectancy of People with HIV according to Timing of Diagnosis. AIDS 26:335–43. , , , , , , , and .
- National Coalition of STD Directors. 2011. Fact Sheet: STD Program Capacity and Preparedness in the United States: Results of a National Survey, 2009. Available at http://www.ncsddc.org/sites/default/files/fact_sheet_std_program_capacity_and_preparedness_in_the_united_states_results_of_a_national_survey_2009.pdf (accessed December 12, 2012).
- National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. 1979. The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research. Washington, DC: U.S. Department of Health, Education and Welfare, April 18.
- 2005. Self-Reported Adherence to Antiretroviral Therapy for HIV-1 Infection and Virologic Treatment Response: A Meta-analysis. Journal of Acquired Immune Deficiency Syndromes 38(4):445–48. , and .
- 2011. Informational Privacy, Public Health, and State Laws. American Journal of Public Health 101(10):1845–50. , and .
- Office of National AIDS Policy. 2010. National HIV/AIDS Strategy for the United States. July. Available at http://www.whitehouse.gov/sites/default/files/uploads/NHAS.pdf (accessed August 16, 2012).
- 1998. Declining Morbidity and Mortality among Patients with Advanced Human Immunodeficiency Virus Infection. HIV Outpatient Study Investigators. New England Journal of Medicine 338:853–60. , , , , , , , and .
- Panel on Antiretroviral Guidelines for Adults and Adolescents. 2012. Guidelines for the Use of Antiretroviral Agents in HIV-1-Infected Adults and Adolescents. U.S. Department of Health and Human Services, C4–C7. Available at http://www.aidsinfo.nih.gov/contentfiles/lvguidelines/adultandadolescentgl.pdf (accessed December 11, 2012).
- 2000. Adherence to Protease Inhibitor Therapy and Outcomes in Patients with HIV Infection. Annals of Internal Medicine 133:21–30. , , , , , , , and .
- Patient Protection and Affordable Care Act. 2010. P.L. 111–148, 124 Stat. 119, March 23. Available at http://www.gpo.gov/fdsys/pkg/PLAW-111publ148/pdf/PLAW-111publ148.pdf (accessed February 22, 2011).
- 2004. Decline in HIV Infectivity Following the Introduction of Highly Active Antiretroviral Therapy. AIDS 18:81–88. , , , , , , and .
- HIV Incidence Surveillance Group. 2011. Estimated HIV Incidence in the United States, 2006–2009. PLoS ONE 6:e17502. , , , , , , , , , , , and
- 2007. “Getting Me Back on Track”: The Role of Outreach Interventions in Engaging and Retaining People Living with HIV/AIDS in Medical Care. AIDS Patient Care and STDs 21(suppl. 1):S20–S29. , , , , , , and .
- 2006. Efficacy of Interventions in Improving Highly Active Antiretroviral Therapy Adherence and HIV-1 RNA Viral Load. Journal of Acquired Immune Deficiency Syndromes 43:S23–S35. , , , , and .
- 2012. Mathematical Model of Comprehensive Test-and-Treat Services and HIV Incidence among Men Who Have Sex with Men in the United States. PLoS ONE 7(2):e29098. , , , , , , , , and .
- 1996. Maternal Viral Load, Zidovudine Treatment and the Risk of Transmission of Human Immunodeficiency Virus Type 1 from Mother to Infant. Pediatric AIDS Clinical Trials Group Protocol 076 Study Group. New England Journal of Medicine 335:1621–29. , , , , , , , , , , , and .
- 2007. Patient and Regimen Characteristics Associated with Self-Reported Nonadherence to Antiretroviral Therapy. PLoS ONE 2(6):e552. , , , , , and .
- 2012. Removing Legal Barriers to High-Quality Care for HIV-Infected Patients. New England Journal of Medicine 366:1268–70. , , , , and .
- 2010. Integration of HIV Testing and Linkage to Care by the Baltimore City Health Department. Sexually Transmitted Diseases 37:129–30. , , , , , , , , and .
- 2010. Historical Development. In Principles and Practice of Public Health Surveillance, ed. L.M. Lee, S.M. Teutsch, S.B. Thacker, and M.E. St. Louis, 1–17. New York: Oxford University Press.
- 2012. Guidelines for Improving Entry into and Retention in Care and Antiretroviral Adherence for Persons with HIV: Evidence-Based Recommendations from an International Association of Physicians in AIDS Care Panel. Annals of Internal Medicine 156(11):817–33. , , , , , , , , , , , , , , , , , , , and .
- 2012. Using Surveillance Data to Identify HIV-Positive Persons Out-of-Care (OOC) in New York City (NYC) and Offer Linkage to Care and HIV Partner Services [Abstract MOPDC0306]. XIX International AIDS Conference, Washington, DC, July 22–27. Available at http://pag.aids2012.org/abstracts.aspx?aid=6498 (accessed January 10, 2013). , , , , and .
- U.S. Department of Health and Human Services. 1996. Health Insurance Portability and Accountability Act of 1996 (HIPAA) Privacy and Security Rules. Available at http://www.hhs.gov/ocr/privacy/ (accessed November 14, 2011).
- 2006. The Survival Benefits of AIDS Treatment in the United States. Journal of Infectious Diseases 194(1):11–19. , , , , , , , and .
- 2011. Strategic Information in DC: Uses of Public Health Data for Evidence Based Programming. Available at http://www.uchaps.org/assets/DC_Strategic_Info_West.pdf (accessed March 21, 2012).
- WHO (World Health Organization). 2011. Guidelines for Intensified Tuberculosis Case-Finding and Isoniazid Preventive Therapy for People Living with HIV in Resource-Constrained Settings. Geneva. Available at http://www.who.int/hiv/pub/tb/9789241500708/en/index.html (accessed June 29, 2012).
- 2010. Predictors of Success with Highly Active Antiretroviral Therapy in an Antiretroviral-Naïve Urban Population. AIDS Research and Human Retroviruses 26:133–38. , , , , and .
- 2009. Using Surveillance Data to Monitor Entry into Care of Newly Diagnosed HIV-Infected Persons: San Francisco, 2006–2007. BMC Public Health 9:17. , , , , , , , , , , and .