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Sijilli: a mobile electronic health records system for refugees in low-resource settings

2019; Elsevier BV; Volume: 7; Issue: 9 Linguagem: Inglês

10.1016/s2214-109x(19)30334-1

2572-116X

Shadi Saleh, Nour El Arnaout, Judith R Faulkner, Mohamed H. Sayegh,

Healthcare Systems and Reforms

The UN Refugee Agency reported that globally the number of forcibly displaced individuals reached 70·8 million in 2019,1The Office of the United Nations High Commissioner for RefugeesFigures at a glance.https://www.unhcr.org/figures-at-a-glance.htmlDate: 2019Date accessed: July 8, 2019Google Scholar many of whom crossed the borders of conflict-affected countries to neighbouring countries and beyond. This migration exposes displaced individuals to health risks in addition to potentially existing illnesses—mainly those acquired due to conflict, including the journey itself.2Gostin LO Roberts AE Forced migration: the human face of a health crisis.JAMA. 2015; 314: 2125-2126Crossref PubMed Scopus (24) Google Scholar An influx of refugees might place the health systems of destination countries under strain, with insufficient resources to provide the health services required.2Gostin LO Roberts AE Forced migration: the human face of a health crisis.JAMA. 2015; 314: 2125-2126Crossref PubMed Scopus (24) Google Scholar This strain is further aggravated by the fact that the majority of host countries for refugees are low-income countries that might already have fragile health systems. Regardless of the ability of a host health-care system to deal with the influx of refugees, other barriers to health care exist, such as language and cultural differences. These barriers can restrict the ability of health-care providers to deliver optimal care, especially during the initial period of displacement. One facilitator of delivering care to vulnerable groups such as refugees is having access to medical records. Access to such information is extremely helpful in the delivery of initial care to refugees, including screening and diagnosis. However, refugees might find gaining access to their medical records before they are forcibly displaced very difficult. Such challenges call for the development of innovative approaches to facilitate access to medical records, ideally in refugees' home countries, but alternatively in the first host country. Cloud-based systems have been promoted for their ability to transfer and store data irrespective of the trajectory of the migration journey.3Asi YM Williams C The role of digital health in making progress toward Sustainable Development Goal (SDG) 3 in conflict-affected populations.Int J Med Inform. 2018; 114: 114-120Crossref PubMed Scopus (50) Google Scholar In their systematic review of recent digital health innovations in humanitarian crises, Mesmar and colleagues4Mesmar S Talhouk R Akik C et al.The impact of digital technology on health of populations affected by humanitarian crises: Recent innovations and current gaps.J Public Health Policy. 2016; 37: 167-200Crossref PubMed Scopus (28) Google Scholar highlight that cloud-based electronic health records (EHR) are among the top five health technologies integrated in humanitarian crisis preparedness and response during times of conflict. The World Disasters Report 20135International Federation of Red Cross and Red Crescent SocietiesWorld disasters report 2013. Focus on technology and the future of humanitarian action.https://www.ifrc.org/PageFiles/134658/WDR%202013%20complete.pdfDate accessed: July 8, 2019Google Scholar stated that the use of cloud-based EHR is a successful approach for the recovery of health records in case of damage to physically held health records: a highly probable incidence in conflict settings. These studies form a wide body of literature stressing the need for the adoption of such approaches for refugees and vulnerable populations. This urgent need constituted the basis of a collaborative project between the Global Health Institute at the American University of Beirut (Beirut, Lebanon) and the health-care software company, Epic. The collaborative project—Sijilli (meaning "my record" in Arabic)—was launched in 2018. Sijilli is a cloud-based mobile EHR system designed to capture essential health information, similar to that noted in a basic medical record. Sijilli aims to serve as a model to securely collect and maintain health data of displaced individuals throughout their displacement journey and beyond. To date, more than 8000 Syrian refugees across Lebanon— the country with the highest proportion of refugees per capita worldwide—have a Sijilli EHR. Sijilli is based on three foundational guiding principles: data security, considering that the target population is vulnerable and that the arrival of refugees remains a potentially politically-sensitive topic; universal access; and interoperability of the health record data. The health information included in Sijilli is originally provided by the refugee and primarily collected by teams of medical professionals led by staff at the Global Health Institute of the American University of Beirut using data-entry-friendly software run on tablet computers. The health data includes the refugee's medical conditions, allergies, history of surgeries, medication use, and a patient health questionnaire (PHQ-9),6Kroenke K Spitzer RL The PHQ-9: a new depression and diagnostic severity measure.Psychiatr Ann. 2002; 32: 509Crossref Scopus (3438) Google Scholar which is a screening tool for depression. Once data collection is completed, a password-protected health record file is generated on a flash drive, with the password being generated exclusively and blindly (ie, without input from the data entry personnel) for the Sijilli holder. An encrypted de-identified version of the generated health record is uploaded to the Sijilli cloud-based server in parallel. A flash drive given to the refugee, contains a password-protected PDF file of the health record that can be used in any health facility around the world without restriction. The cloud-based version of the health record of any Sijilli holder can be accessed globally by either the patient or the health provider via the Sijilli website following a two-step identity verification process. The multiple layers of security (ie, USBs, hardware used for data collection, and internal and external servers of the cloud-based system) are crucial to ensure data security and privacy of the Sijilli system. One of the main challenges of Sijilli is that Sijilli holders could forget the password for their Sijilli EHR. However, the automatic generation of the password follows a basic rule whereby the generated code is an ordered combination of the first letter of each of the refugee's first name, father's name, mother's name, family name, and date of birth. Therefore, Sijilli holders can recover their passwords by following simple instructions on the Sijilli website and their personal Sijilli USBs. In conclusion, Sijilli is intended to demonstrate how partnerships in global health can support the health needs of at-risk populations. The project is a tripartite partnership among an academic institution based in a low-income country leading the project's technical and operational management and implementation, a private company based in a high-income country providing technical infrastructure, and a network of local non-governmental organisations facilitating access to the target population. Such models of partnerships coupled with the employment of low-resource innovations remain much needed to enhance the resilience of health systems under great strain. SS has a utility patent pending. All other authors declare no competing interests.