Identification of the necessary data elements to report AIDS
A systematic review
Keywords:
HIV /AIDS, Minimum Data Set, Health Information Exchange, Public HealthAbstract
Background: The main focus of the surveillance system of AIDS in Iran is on direct clinical care for HIV, and other supportive facilities and secondary programmes have been somewhat neglected. Creating templates for reporting AIDS in Iran that can fulfil the needs of all information stakeholders, is a necessity for the Public Health Information Exchange (PHIE) system. Objective: The aim of this study was to develop a comprehensive reporting template of the PHIE system for HIV/AIDS in Iran. Methods: This study was performed in 2017. Through a systematic review of the Web of Science, Science Direct, Scopus, PubMed databases and Google Scholar search engine from 2000 to 2016, the necessary data elements are identified by the main keywords of the “Minimum Data Set” and HIV / AIDS collection. Results: As many as 28 studies were enrolled in the research. The MDS was designed for the following categories: 1) administrative, managerial, and policy-makers (with 10 data classes and 90 data elements), 2) Clinical and medical (six data classes and 83 data elements), and 3) support services, counselling and subsidiary (three data classes and 32 data elements). Conclusion: Iran stands in a fortunate position in terms of clinical and care programmes for AIDS treatment. A fundamental challenge is the insufficient attention to support and consulting programmes as well as the lack of information for accurate and efficient policy and decision-making. A reporting format has been designed to meet the needs of all information requirements of beneficiaries related to HIV/AIDS care and management.References
Vitoria M, Granich R, Gilks CF, Gunneberg C, Hosseini M, Were W, et al. The global fight against
HIV/AIDS, tuberculosis, and malaria. Am J Clin Pathol. 2009; 131(6): 844-8. doi:
1309/AJCP5XHDB1PNAEYT. PMID: 19461091.
Mohammadpour A, Yekta ZP, Nasrabadi ARN, Mohraz M. Coming to terms with a diagnosis of HIV in
Iran: a phenomenological study. J Assoc Nurses AIDS Care. 2009; 20(4): 249-59. doi:
1016/j.jana.2009.03.003. PMID: 19576542.
Myers JJ, Koester KA, Chakravarty D, Pearson C, Maiorana A, Shade SB, et al. Perceptions regarding the
ease of use and usefulness of health information exchange systems among medical providers, case
managers and non-clinical staff members working in HIV care and community settings. Int J Med Inform.
; 81(10): e21-e9. doi: 10.1016/j.ijmedinf.2012.07.005. PMID: 22854159.
Shade SB, Chakravarty D, Koester KA, Steward WT, Myers JJ. Health information exchange interventions
can enhance quality and continuity of HIV care. Int J Med Inform. 2012; 81(10): e1-e9. doi:
1016/j.ijmedinf.2012.07.003. PMID: 22854158.
Zabat G, Caoili J, Anduyon A, Ramos G, Morin M, Ditangco R, et al. Design and implementation of an
HIV/AIDS electronic medical record system (HIV/AIDS EMR) in the Philippines. AMIA Annu Symp
Proc. 2007: 1166. PMID: 18694262.
Tierney WM, Beck EJ, Gardner RM, Musick B, Shields M, Shiyonga NM, et al. Viewpoint: A Pragmatic
Approach to Constructing a Minimum Data Set for Care of Patients with HIV in Developing Countries. J
Am Med Inform Assoc. 2006; 13(3): 253-60. doi: 10.1197/jamia.M2005.
Ahmadi M, Alipour J, Mohammadi A, Khorami F. Development a minimum data set of the information
management system for burns. Burns. 2015; 41(5): 1092-9. doi: 10.1016/j.burns.2014.12.009. PMID:
Ahmadi M, Mohammadi A, Chraghbaigi R, Fathi T, Baghini MS. Developing a minimum data set of the
information management system for orthopedic injuries in iran. Iran Red Crescent Med J. 2014; 16(7). doi:
5812/ircmj.17020. PMID: 25237576, PMCID: PMC4166095.
Khajekazemi R, Rezazadeh M, Mhzari K. Islamic Republic of Iran AIDS Progress Report. National AIDS
Committee Secretariat. Ministry of Health and Medical Education. 2015. Available from:
http://www.unaids.org/sites/default/files/country/documents/IRN_narrative_report_2015.pdf.
Haghdoost AA, Mostafavi E, Mirzazadeh A, Navadeh S, Feizzadeh A, Fahimfar N, et al. Modelling of
HIV/AIDS in Iran up to 2014. Journal of AIDS and HIV Research. 2011; 3(12): 231-9. doi:
5897/JAHR11.030.
Tavoosi A, Zaferani A, Enzevaei A, Tajik P, Ahmadinezhad Z. Knowledge and attitude towards HIV/AIDS
among Iranian students. BMC Public Health. 2004; 4(1): 1. doi: 10.1186/1471-2458-4-17. PMID:
, PMCID: PMC420470.
The third National AIDS Strategic Plan. Iranian ministry of health; 2009. Available from:
http://idrc.resv.hums.ac.ir/uploads/57_734_80_2.pdf.
Vaismoradi M, Turunen H, Bondas T. Content analysis and thematic analysis: Implications for conducting
a qualitative descriptive study. Nurs Health Sci. 2013; 15(3): 398-405. doi: 10.1111/nhs.12048. PMID:
Buchanan RJ, Wang S, Huang C. Analyses of nursing home residents with HIV and dementia using the
minimum data set. Journal of acquired immune deficiency syndromes (1999). 2001; 26(3): 246-55. doi:
1097/00042560-200103010-00006.
AIDS Public Information Data Set. Washington, DC: US Department of Health and Human Services; 2000:
-52.
Castilla J, Sobrino P, de la Fuente L, Noguer I, Guerra L, Parras F. Late diagnosis of HIV infection in the
era of highly active antiretroviral therapy: consequences for AIDS incidence. Aids. 2002; 16(14): 1945-51.
doi: 10.1097/00002030-200209270-00012. PMID: 12351955.
Fraser HS, Jazayeri D, Nevil P, Karacaoglu Y, Farmer PE, Lyon E, et al. An information system and
medical record to support HIV treatment in rural Haiti. BMJ. 2004; 329(7475): 1142-6. doi:
1136/bmj.329.7475.1142. PMID: 15539669, PMCID: PMC527691.
AIDS Public Information Data in the United States for the years 1981-2002. United States: Centers for
Disease Control and Prevention; 2016.
Siika AM, Rotich JK, Simiyu CJ, Kigotho EM, Smith FE, Sidle JE, et al. An electronic medical record
system for ambulatory care of HIV-infected patients in Kenya. Int J Med Inform. 2005; 74(5): 345-55. doi:
1016/j.ijmedinf.2005.03.002. PMID: 15893257.
World Health Organization, UNICEF. Three interlinked patient monitoring systems for HIV care; 2012.
Patient monitoring guidelines for HIV care and antiretroviral therapy. WHO; 2006. Available from:
http://www.who.int/3by5/capacity/ptmonguidelinesfinalv1.PDF.
Altuğlu I, Cavuşoğlu C, Ciçek C, Tünger O. Development of a database for tracking HIV positive/AIDS
patients. Mikrobiyol bul. 2007; 41(1): 101-8. PMID: 17427558.
Liu D, Wang X, Pan F, Xu Y, Yang P, Rao K. Web-based infectious disease reporting using XML forms.
Int J Med Inform. 2008; 77(9): 630-40. doi: 10.1016/j.ijmedinf.2007.10.011. PMID: 18060833.
Rajeev D, Staes CJ, Evans RS, Mottice S, Rolfs R, Samore MH, et al. Development of an electronic public
health case report using HL7 v2. 5 to meet public health needs. J Am Med Inform Assoc. 2010; 17(1): 34- 41. doi: 10.1197/jamia.M3299. PMID: 20064799, PMCID: PMC2995632.
Were MC, Shen C, Bwana M, Emenyonu N, Musinguzi N, Nkuyahaga F, et al. Creation and evaluation of
EMR-based paper clinical summaries to support HIV-care in Uganda, Africa. Int J Med Inform. 2010;
(2): 90-6. doi: 10.1016/j.ijmedinf.2009.11.006. PMID: 20036193, PMCID: PMC2818680.
Halpern M, Lachmansingh B, Minior T, Hasbrouck LM, Persaud N, Foo A. Implementation of a
standardized HIV patient monitoring system in Guyana. Rev Panam Salud Publica. 2010; 28(2): 107-1. doi:
1590/S1020-49892010000800006. PMID: 20963277.
Patra D, Mukhopadhyay J, Majumdar A, Majumdar B, Dogra D. Tele-consultation using Clinical
Document Architecture in disease specific domains. e-Health Networking Applications and Services. 12th
IEEE International Conference on; 2010.
Patra D, Mukherjee J, Majumdar A, Majumdar B, Das Bhattacharya S, Paul S. A Standard, Knowledge
Integrated Consultation Document for Pediatric HIV Information Exchange. Journal of Healthcare
Engineering. 2011; 2(2): 161-82. doi: 10.1260/2040-2295.2.2.161.
Ford MA, Spicer CM. Monitoring HIV care in the United States: indicators and data systems: National
Academies Press; 2012.
HIV Care Program (HCP) Minimum Data Set. 2012. Available from:
https://www.cdph.ca.gov/programs/aids/Documents/ARIESHCPMinimumDataset.pdf.
Nematollahi M, Moghaddasi H, Askarian M, Afsarkazerooni P. National HIV/AIDS Surveillance Pattern
for Iran's Health System. Health Information Management. 2008; 4(2): 153-66.
Gordon P, Camhi E, Hesse R, Odlum M, Schnall R, Rodriguez M, et al. Processes and outcomes of
developing a continuity of care document for use as a personal health record by people living with
HIV/AIDS in New York City. Int J Med Inform. 2012; 81(10): e63-e73. doi:
1016/j.ijmedinf.2012.06.004. PMID: 22841825, PMCID: PMC4447096.
Schnall R, Cimino JJ, Bakken S. Development of a prototype continuity of care record with context- specific links to meet the information needs of case managers for persons living with HIV. Int J Med
Inform. 2012; 81(8): 549-55. doi: 10.1016/j.ijmedinf.2012.05.002. PMID: 22632821, PMCID:
PMC3515778.
Castelnuovo B, Kiragga A, Afayo V, Ncube M, Orama R, Magero S, et al. Implementation of provider- based electronic medical records and improvement of the quality of data in a large HIV program in Sub- Saharan Africa. PloS One. 2012; 7(12): e51631. doi: 10.1371/journal.pone.0051631. PMID: 23284728,
PMCID: PMC3524185.
Technical Guidance for HIV Surveillance Programs Molecular HIV Surveillance (MHS). Atlanta, Georgia:
HIV Incidence and Case Surveillance Branch; 2012. Available from:
http://www.reginfo.gov/public/do/DownloadDocument?objectID=65853001.
Standards & interoperability framework public health reporting initiative data harmonization profile
Version 2.0. U.S: Health and Human Services Office of the National Coordinator for Health IT; 2013.
Technical and operational considerations for implementing HIV viral load testing. Geneva, Switzerland:
WHO; 2014.
Puttkammer NH. Using Data from the iSanté National Electronic Medical Record System to Strengthen
Haiti’s HIV Antiretroviral Therapy Program. University of Washington; 2014.
Enhanced STD Surveillance Network (eSSuN) Protocol and Project Implementation Guide; 2015.
Available from: https://www.cdc.gov/std/ssun/protocol_v8.2_508.pdf.
Tierney WM, Sidle JE, Diero LO, Sudoi A, Kiplagat J, Macharia S, et al. Assessing the impact of a primary
care electronic medical record system in three kenyan rural health centers. J Am Med Inform Assoc. 2015:
ocv074. doi: 10.1093/jamia/ocv074. PMID: 26260246.
Lai TY, Larson EL, Rockoff ML, Bakken S. User Acceptance of HIV TIDES—tailored interventions for
management of depressive symptoms in persons living with HIV/AIDS. J Am Med Inform Assoc. 2008;
(2): 217-26. doi: 10.1197/jamia.M2481.
Magnus M, Herwehe J, Gruber D, Wilbright W, Shepard E, Abrams A, et al. Improved HIV-related
outcomes associated with implementation of a novel public health information exchange. Int J Med Inform.
; 81(10): e30-e8. doi: 10.1016/j.ijmedinf.2012.06.005. PMID: 22883431.
Fabiani M, Cawthorne A, Nattabi B, Ayella EO, Ogwang M, Declich S. Investigating factors associated
with uptake of HIV voluntary counselling and testing among pregnant women living in North Uganda.
AIDS Care. 2007; 19(6): 733-9. doi: 10.1080/09540120601087731. PMID: 17573592.
Kowal P, Peachey K. Indicators for the minimum data set project on ageing: a critical review in sub- Saharan Africa. Dar es Salaam, United Republic of Tanzania: WHO; 2001: 9.
Eshrati B, Asl RT, Dell CA, Afshar P, Millson PM, Kamali M, et al. Preventing HIV transmission among
Iranian prisoners: initial support for providing education on the benefits of harm reduction practices. Harm
Reduction Journal. 2008; 5(1): 21. doi: 10.1186/1477-7517-5-21.
Mirzaei M, Poorolajal J, Khazaei S, Saatchi M. Survival rate of AIDS disease and mortality in HIVinfected patients in Hamadan, Iran: A registry-based retrospective cohort study (1997–2011). Int J STD
AIDS. 2013; 24(11): 859-66. doi: 10.1177/0956462413486457. PMID: 23970604.
Rajeev D, Staes CJ, Evans RS, Price A, Hill M, Mottice S, et al. Evaluation of HL7 v2. 5.1 electronic case
reports transmitted from a healthcare enterprise to public health. AMIA Annu Symp Proc. 2011; 2011:
-52. PMID: 22195175, PMCID: PMC3243216.
Rose D. The Value of Electronic Laboratory Reporting for Public Health. Scientific Technologies
Corporation. 2010.
Rosen S, Fox MP, Larson BA, Sow PS, Ehrenkranz PD, Venter F, et al. Accelerating the Uptake and
Timing of Antiretroviral Therapy Initiation in Sub-Saharan Africa: An Operations Research Agenda. PLoS
Med. 2016; 13(8): e1002106. doi: 10.1371/journal.pmed.1002106. PMID: 27505444 PMCID:
PMC4978457.
Palella Jr FJ, Baker RK, Moorman AC, Chmiel JS, Wood KC, Brooks JT, et al. Mortality in the highly
active antiretroviral therapy era: changing causes of death and disease in the HIV outpatient study. J Acquir
Immune Defic Syndr. 2006; 43(1): 27-34. doi: 10.1097/01.qai.0000233310.90484.16. PMID: 16878047.
Van Oosterhout JJ, Brown L, Weigel R, Kumwenda JJ, Mzinganjira D, Saukila N, et al. Diagnosis of
antiretroviral therapy failure in Malawi: poor performance of clinical and immunological WHO criteria.
Trop Med Int Health. 2009; 14(8): 856-61. doi: 10.1111/j.1365-3156.2009.02309.x. PMID: 19552661.
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