Protecting the confidentiality and security of personal health information in low- and middle-income countries in the era of SDGs and Big Data

Article English OPEN
Beck, Eduard J. ; Gill, Wayne ; De Lay, Paul R. (2016)
  • Publisher: Co-Action Publishing
  • Journal: Global Health Action, volume 9 (issn: 1654-9716, eissn: 1654-9880)
  • Related identifiers: doi: 10.3402/gha.v9.32089, pmc: PMC5123209
  • Subject: stigma | personal health information | confidentiality | SDGs | privacy laws | ethics | personal health information; privacy laws; confidentiality; security; stigma; discrimination; ethics; SDGs; Big Data | security | Current Debate | RA421-790.95 | discrimination | Public Health; Global Health; Medicine; Preventive Medicine; Epidemiology; Sociology; Health Economics; Ethics; Health Systems; Community Health; Population Health | Big Data

Background: As increasing amounts of personal information are being collected through a plethora of electronic modalities by statutory and non-statutory organizations, ensuring the confidentiality and security of such information has become a major issue globally. While the use of many of these media can be beneficial to individuals or populations, they can also be open to abuse by individuals or statutory and non-statutory organizations. Recent examples include collection of personal information by national security systems and the development of national programs like the Chinese Social Credit System. In many low- and middle-income countries, an increasing amount of personal health information is being collected. The collection of personal health information is necessary, in order to develop longitudinal medical records and to monitor and evaluate the use, cost, outcome, and impact of health services at facility, sub-national, and national levels. However, if personal health information is not held confidentially and securely, individuals with communicable or non-communicable diseases (NCDs) may be reluctant to use preventive or therapeutic health services, due to fear of being stigmatized or discriminated against. While policymakers and other stakeholders in these countries recognize the need to develop and implement policies for protecting the privacy, confidentiality and security of personal health information, to date few of these countries have developed, let alone implemented, coherent policies. The global HIV response continues to emphasize the importance of collecting HIV-health information, recently re-iterated by the Fast Track to End AIDS by 2030 program and the recent changes in the Guidelines on When to Start Antiretroviral Therapy and on Pre-exposure Prophylaxis for HIV. The success of developing HIV treatment cascades in low- and middle-income countries will require the development of National Health Identification Systems. The success of programs like Universal Health Coverage, under the recently ratified Sustainable Development Goals is also contingent on the availability of personal health information for communicable and non-communicable diseases.Design: Guidance for countries to develop and implement their own guidelines for protecting HIV-information formed the basis of identifying a number of fundamental principles, governing the areas of privacy, confidentiality and security. The use of individual-level data must balance maximizing the benefits from their most effective and fullest use, and minimizing harm resulting from their malicious or inadvertent release.Discussion: These general principles are described in this paper, as along with a bibliography referring to more detailed technical information. A country assessment tool and user’s manual, based on these principles, have been developed to support countries to assess the privacy, confidentiality, and security of personal health information at facility, data warehouse/repository, and national levels. The successful development and implementation of national guidance will require strong collaboration at local, regional, and national levels, and this is a pre-condition for the successful implementation of a range of national and global programs.Conclusion: This paper is a call for action for stakeholders in low- and middle-income countries to develop and implement such coherent policies and provides fundamental principles governing the areas of privacy, confidentiality, and security of personal health information being collected in low- and middle-income countries.Keywords: personal health information; privacy laws; confidentiality; security; stigma; discrimination; ethics; SDGs; Big Data(Published: 23 November 2016)Responsible Editor: Peter Byass, Umeå University, Sweden.To access the supplementary material for this article, please see Supplementary files in the column to the right (under ‘Article Tools’)Citation: Glob Health Action 2016, 9: 32089 -
  • References (37)
    37 references, page 1 of 4

    1. UNAIDS (2015). How AIDS changed everything: MDG 6 15 years: 15 lessons of hope from the AIDS response. Geneva, Switzerland: UNAIDS.

    2. Motsoaledi A. Speech by Minister of Health Dr Aaron Motsoaledi, on occasion of XVIII International AIDS Conference, Vienna, 20 July 2010. Available from: za/speech-minister-health-dr-aaron-motsoaledion-occasion-xviiiinternational-aids-conference-vienna [cited 13 January 2016].

    3. INSIGHT START Study Group, Lundgren JD, Babiker AG, Gordin F, Emery S, Grund B, et al. Initiation of antiretroviral therapy in early asymptomatic HIV infection. N Engl J Med 2015; 373: 795 807.

    4. Danel C, Raoul M, Delphine G, Anani B, Carrou JL, Kouame GM, et al. Early ART and IPT in HIV-infected African adults with high CD4 count (Temprano Trial), 2015. Conference on Retroviruses and Opportunistic Infections (CROI 2015), Seattle, 23 26 February 2015. Oral late breaker abstract 115LB. Available from: [cited 13 January 2016].

    5. Panel on Antiretroviral Guidelines for Adults and Adolescents. Guidelines for the use of antiretroviral agents in HIV-1-infected adults and adolescents. Department of Health and Human Services. Available from: Files/AdultandAdolescentGL.pdf [cited 13 January 2016].

    6. WHO (2015). Guideline on when to start antiretroviral therapy and pre-exposure prophylaxis for HIV. Geneva, Switzerland: WHO.

    7. UNAIDS (2014). FAST-TRACK: ending the AIDS epidemic by 2030. Geneva, Switzerland: UNAIDS.

    8. Samji H, Cescon A, Hogg RS, Modur SP, Althoff KN, Buchacz K, et al. Closing the gap: increases in life expectancy among treated HIV-positive individuals in the United States and Canada. PLoS One 2013; 8: e81355.

    9. Nsanzimana S, Remera E, Kanters S, Chan K, Forrest JI, Ford N, et al. Life expectancy among HIV-positive patients in Rwanda: a retrospective observational cohort study. Lancet Glob Health 2015; 3: e169 77.

    10. Nakagawa F, May M, Phillips A. Life expectancy living with HIV: recent estimates and future implications. Curr Opin Infect Dis 2013; 26: 17 25.

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