HIV Case Surveillance Informatics – Resource guide for surveillance information systems
A brief overview of resources that may be useful for teams who wish to develop an HIV Case surveillance information system
TECHNICAL NOTE
Corresponding Author EJ Manders US Centers for Disease Control and Prevention, Center for Global Health, Division of Global HIV/AIDS [email protected]
7 March 2014
This document does not necessarily represent the opinion of the US Centers for Disease Control and Prevention
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Information needs in HIV interventions
Bibliography
This bibliography is created from searches in the published literature, and documents aggregated from key public health websites, using search terms (“HIV Case Surveillance,” “public health informatics”, “public health information systems”).
Some items are US centric or contain advanced topics that may not be relevant in all settings. We have annotated several items to help the reader select appropriate resources, and hope that it provides a useful starting point for further exploration.
Essential reading
1. CDC (US), Council of State and Territorial Epidemiologists. 2006a. “Technical Guidance for HIV/AIDS Surveillance Programs - Volume I: Policies and Procedures”. Atlanta, GA: Centers for Disease Control and Prevention. http://www.cdc.gov/hiv/statistics/recommendations.
2. ———. 2006b. “Technical Guidance for HIV/AIDS Surveillance Programs - Volume II: Data Collection Resources and Reporting”. Atlanta, GA: Centers for Disease Control and Prevention. http://www.cdc.gov/hiv/statistics/recommendations.
3. ———. 2006c. “Technical Guidance for HIV/AIDS Surveillance Programs - Volume III: Security and Confidentiality Guidelines”. Atlanta, GA: Centers for Disease Control and Prevention. http://www.cdc.gov/hiv/statistics/recommendations.
4. ———. 2011. “Data Security and Confidentiality Guidelines for HIV, Viral Hepatitis, STD, and TB Programs - Standards to Facilitate Sharing and Use of Surveillance Data for Public Health Action”. Atlanta, GA: U.S. Department of Health and Human Services, Centers for Disease Control and Prevention. http://www.cdc.gov/nchhstp/programintegration/docs/PCSIDataSecurityGuidelines.p df. This guidance on information security supersedes the “Technical Guidance for HIV/AIDS Surveillance Programs - Volume III: Security and Confidentiality Guidelines”
5. UNAIDS/WHO WG on Global HIV/AIDS and STI surveillance. 2000. “Guidelines for Second Generation HIV Surveillance: The Next Decade”. WHO/CDS/CSR/EDC/2000.5. Geneva: World Health Organization. http://www.who.int/hiv/pub/surveillance/pub3/en/index.html.
6. ———. 2014. “Guidelines for Effective Use of Data from HIV Surveillance Systems”. UNAIDS/04.01. Geneva, Switzerland. Accessed February 3. http://www.who.int/hiv/pub/surveillance/useofdata/en/index.html.
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7. Glynn, M. Kathleen, and Lorraine C Backer. 2010. “Chapter 4: Collecting Public Health Surveillance Data.” In Principles and Practice of Public Health Surveillance, Third Edition. Oxford University Press US. ESSENTIAL READING. This is a textbook introduction
8. Krishnamurthy, Ramesh, and Michael E. St Louis. 2010. “Chapter 5: Informatics and the Management of Public Health Surveillance Data.” In Principles and Practice of Public Health Surveillance, Third Edition. Oxford University Press US. ESSENTIAL READING. Text book chapter on surveillance informatics
9. World Health Organization. 2013. “eHealth Standardization and Interoperability.” Sixty-Sixth World Health Assembly. WHA66.24. 27 May 2013. Accessed April 2014. http://apps.who.int/gb/ebwha/pdf_files/WHA66/A66_R24-en.pdf
Optional Reading
1. Archibald, Chris P, Jason Sutherland, Jennifer Geduld, Donald Sutherland, and Ping Yan. 2003. “Combining Data Sources to Monitor the HIV Epidemic in Canada.” Journal of Acquired Immune Deficiency Syndromes (1999) 32 Suppl 1: S24–32.
2. Breil, Bernhard, Axel Semjonow, Carsten Müller-Tidow, Fleur Fritz, and Martin Dugas. 2011. “HIS-based Kaplan-Meier Plots - a Single Source Approach for Documenting and Reusing Routine Survival Information.” BMC Medical Informatics and Decision Making 11: 11. doi:10.1186/1472-6947-11-11. An HIS generated Kaplan Meier plot is an example of the type of improved analytics that may be achieved when we derive epidemiological outcomes analysis from patient level information systems
3. Davies, Richard F., Jason Morin, Ramanjot S. Bhatia, and Lambertus de Bruijn. 2013. “A System for Surveillance Directly from the EMR.” Online Journal of Public Health Informatics 5 (1). doi:10.5210/ojphi.v5i1.4553. http://ojphi.org/ojs/index.php/ojphi/article/view/4553.
4. Diaz, Theresa, Jesus M Garcia-Calleja, Peter D Ghys, and Keith Sabin. 2009. “Advances and Future Directions in HIV Surveillance in Low- and Middle-income Countries.” Current Opinion in HIV and AIDS 4 (4): 253–59. doi:10.1097/COH.0b013e32832c1898.
5. Dixon, Brian E, Jason A Siegel, Tanya V Oemig, and Shaun J Grannis. 2013. “Electronic Health Information Quality Challenges and Interventions to Improve Public Health Surveillance Data and Practice.” Public Health Reports (Washington, D.C.: 1974) 128 (6): 546–53.
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6. “Electronic Disease Surveillance System Vendor Analysis: An Overview of the Selected EDSS Landscape for Public Health Agencies.” 2013. Technical Report. Atlanta, GA: Public Health Informatics Institute. http://www.phii.org/sites/default/files/resource/pdfs/Electronic%20Disease%20Surve illance%20System%20Vendor%20Analysis%20FINAL.pdf. This vendor analysis is US centric but gives an indication of considerations in selecting a software vendor for this application.
7. Gostin, Lawrence O., John W. Ward, and A. Cornelius Baker. 1997. “National HIV Case Reporting for the United States — A Defining Moment in the History of the Epidemic.” New England Journal of Medicine 337 (16): 1162–67. doi:10.1056/NEJM199710163371611.
8. “Guidelines for Second Generation HIV Surveillance: An Update: Know Your Epidemic.” 2014. Accessed February 3. http://www.who.int/hiv/pub/surveillance/2013package/module1/en/.
9. Herwehe, Jane, Wayne Wilbright, Amir Abrams, Susan Bergson, Joseph Foxhood, Michael Kaiser, Luis Smith, Ke Xiao, Amy Zapata, and Manya Magnus. 2012. “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. doi:10.1136/amiajnl-2011-000412.
10. Hills, Rebecca A., Janet G. Baseman, Debra Revere, Craig Boge, Mark W. Oberle, Jason N. Doctor, and William B. Lober. 2011. “Applying the XForms Standard to Public Health Case Reporting and Alerting.” Online Journal of Public Health Informatics 3 (2). doi:10.5210/ojphi.v3i2.3656. http://ojphi.org/ojs/index.php/ojphi/article/view/3656. Advanced topic on using information standards for public health reporting. Relevant mostly in a more comprehensive approach to public health reporting systems.
11. Hopkins, Sharon G, Sarah E Gelfand, Susan E Buskin, James B Kent, Erin M Kahle, and Susan E Barkan. 2005. “HIV Testing Behaviors and Attitudes after Adoption of Name- to-code HIV Case Surveillance in Washington State.” Journal of Public Health Management and Practice: JPHMP 11 (1): 25–28. Considerations on name based reporting (US centric)
12. “Institut de Veille Sanitaire.” 2012. Accessed December 21. http://www.invs.sante.fr/surveillance/vih-sida/. French language HIV case report forms
13. “ISO/TS 21091:2005 - Health Informatics -- Directory Services for Security, Communications and Identification of Professionals and Patients.” 2012. Accessed July 25. http://www.iso.org/iso/home/store/catalogue_tc/catalogue_detail.htm?csnumber=35 647. A key information standard that could be adopted in an HIV case surveillance system.
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14. Klompas, Michael, Jason McVetta, Ross Lazarus, Emma Eggleston, Gillian Haney, Benjamin A Kruskal, W Katherine Yih, et al. 2012. “Integrating Clinical Practice and Public Health Surveillance Using Electronic Medical Record Systems.” American Journal of Preventive Medicine 42 (6 Suppl 2): S154–162. Insight in the coupling of clinical and public health information systems.
15. Klompas, Michael, Michael Murphy, Julie Lankiewicz, Jason McVetta, Ross Lazarus, Emma Eggleston, Patricia Daly, et al. 2011. “Harnessing Electronic Health Records for Public Health Surveillance.” Online Journal of Public Health Informatics 3 (3). doi:10.5210/ojphi.v3i3.3794. http://www.ncbi.nlm.nih.gov/pubmed/23569616.
16. Lee, Lisa M, and Lawrence O Gostin. 2009. “Ethical Collection, Storage, and Use of Public Health Data: a Proposal for a National Privacy Protection.” JAMA: The Journal of the American Medical Association 302 (1): 82–84. doi:10.1001/jama.2009.958.
17. McMurry, Andrew J., Clint A. Gilbert, Ben Y. Reis, Henry C. Chueh, Isaac S. Kohane, and Kenneth D. Mandl. 2007. “A Self-scaling, Distributed Information Architecture for Public Health, Research, and Clinical Care.” Journal of the American Medical Informatics Association : JAMIA 14 (4): 527–33. doi:10.1197/jamia.M2371.
18. McNabb, Scott J N. 2010. “Comprehensive Effective and Efficient Global Public Health Surveillance.” BMC Public Health 10 Suppl 1: S3. doi:10.1186/1471-2458-10-S1-S3.
19. McNabb, Scott J N, D Koo, and J Seligman. 2006. “Informatics and Public Health at CDC.” Morbidity and Mortality Weekly Report 55 Suppl 2: 25–28. Tutorial paper (US centric)
20. Morris, G, D Snider, and M Katz. 1996. “Integrating Public Health Information and Surveillance Systems.” Journal of Public Health Management and Practice: JPHMP 2 (4): 24–27.
21. Morrison, Frances P., Rita Kukafka, and Stephen B. Johnson. 2005. “Analyzing the Structure and Content of Public Health Messages.” AMIA Annual Symposium Proceedings 2005: 540–44.
22. Murray, Elizabeth, Joanne Burns, Carl May, Tracy Finch, Catherine O’Donnell, Paul Wallace, and Frances Mair. 2011. “Why Is It Difficult to Implement E-health Initiatives? A Qualitative Study.” Implementation Science: IS 6: 6. doi:10.1186/1748-5908-6-6. An general introduction of the challenges of implementing eHealth initiatives
23. “National Electronic Disease Surveillance System (NEDSS): a Standards-based Approach to Connect Public Health and Clinical Medicine.” 2001. Journal of Public Health Management and Practice: JPHMP 7 (6): 43–50.
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Surveillance information system (US Centric)
24. Nguyen, T H, T L Hoang, K C Pham, E J van Ameijden, W Deville, and I Wolffers. 1999. “HIV Monitoring in Vietnam: System, Methodology, and Results of Sentinel Surveillance.” Journal of Acquired Immune Deficiency Syndromes (1999) 21 (4): 338– 46.
25. Paul, Sindy M, Helene Cross, Linda Dimasi, Abdel R Ibrahim, and Carmine J Grasso. 2003. “HIV Disease Surveillance. Collaboration Between Medicine and Public Health.” New Jersey Medicine: The Journal of the Medical Society of New Jersey 100 (9 Suppl): 7–10; quiz 61–62.
26. “PD CEN/TR 15872 Health Informatics - Guidance on Patient Identification and Cross- referencing of Identities.” 2009. Draft Technical report submitted for approval PD CEN/TR 15872. about:blank. Proposed EU standard on handling patient identification
27. Porter, Laura E., Paul D. Bouey, Sian Curtis, Mindy Hochgesang, Priscilla Idele, Bobby Jefferson, Wuleta Lemma, et al. 2012. “Beyond Indicators: Advances in Global HIV Monitoring and Evaluation During the PEPFAR Era.” JAIDS Journal of Acquired Immune Deficiency Syndromes 60: S120–S126. doi:10.1097/QAI.0b013e31825cf345. Includes an argument for case surveillance as an essential strategic information component
28. Rajeev, Deepthi, Catherine Staes, R Scott Evans, Andrea Price, Mary Hill, Susan Mottice, Ilene Risk, and Robert Rolfs. 2011. “Evaluation of HL7 V2.5.1 Electronic Case Reports Transmitted from a Healthcare Enterprise to Public Health.” AMIA ... Annual Symposium Proceedings / AMIA Symposium. AMIA Symposium 2011: 1144–52. Public health reporting message structure (US centric)
29. Rennie, Stuart, Abigail Norris Turner, Bavon Mupenda, and Frieda Behets. 2009. “Conducting Unlinked Anonymous HIV Surveillance in Developing Countries: Ethical, Epidemiological, and Public Health Concerns.” PLoS Med 6 (1): e1000004. doi:10.1371/journal.pmed.1000004.
30. Rolka, Henry, David W Walker, Roseanne English, Myron J Katzoff, Gail Scogin, Elizabeth Neuhaus, and Centers for Disease Control and Prevention. 2012. “Analytical Challenges for Emerging Public Health Surveillance.” Morbidity and Mortality Weekly Report 61 Suppl: 35–40.
31. St Louis, Michael, and Centers for Disease Control and Prevention. 2012. “Global Health Surveillance.” Morbidity and Mortality Weekly Report 61 Suppl: 15–19. Overview article making an argument for surveillance information systems
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32. Data Governance. 2012. “5 Days to a Data Maturity Model for Data Governance.” Accessed April 2014. http://datagovernanceblog.com/category/maturity-model
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