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

BACKGROUND: . 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.