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A New Way to Help Refugees Keep Their Health Records Available

Over a period of a year and a half, a new health project was able to create electronic medical records for more than 10,000 Syrian refugees in Lebanon.

Refugees usually do not have paper health records, which can easily be lost or destroyed during the migration journey, if anyone even had them to start with. The new project, which is named Sijilli, an Arabic word for “My Record,” is affiliated with the American University of Beirut’s Global Health Institute, and seeks to archive refugees’ medical information electronically so they and their health service providers can access it anywhere in the world . Ultimately the goal is to improve refugees’ health.

“Many refugees are forced to retake medical tests and incur unnecessary financial burdens just because they do not carry their medical records,” said Nour el-Arnaout, the program’s coordinator, “The new project saves records, saves money and time, and enhances access to health services during the asylum journey.”

Over one million Syrian refugees registered with UNHCR, the United Nations’ refugee agency, live in Lebanon, while the government estimates the actual number of displaced Syrians in the country at 1.5 million. With limited local health services and the recent spread of the novel coronavirus pandemic, fears have increased that the virus has reached Syrian and Palestinian refugee camps in Lebanon, given the high rates of infection in the country.

Refugees’ health is at risk anyway, since they are often forced to live in informal settlements with poor sanitation. (See a related article, “For Syrian Refugees in Lebanon, Precarious Lives.”)

“The new project saves records, saves money and time, and enhances access to health services during the asylum journey.”

Nour el-Arnaout
 The Sijilli program’s coordinator

No positive cases of the new coronavirus have been reported to date among refugees in Lebanon, but aid workers are concerned that refugees do not have enough water to wash their hands regularly, a key precaution in protecting against infection. Water in the camps has to be trucked in and is in short supply.

In such circumstances, and in many others, refugees’ health records could be important to establish who is at high risk, and the Sijilli project has earned strong praise from some health care workers.

“Despite my volunteer experience with NGOs, my experience with this program is very different and exceptional,” said Ghaida el-Siddiq, a Lebanese volunteer doctor. “It is the first time that I have been dealing with a refugee living in a tent without health facilities or infrastructure.”

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Shadi Saleh, the founding director of the Global Health Institute, believes that the Sijilli project is a model for the entire region. “The project offers electronic solutions that support health services in low and middle-income countries,” he said in a press release.

Emphasis on Data Security

The Sijilli project was based on two fundamental principles: data security and accessibility anywhere in the world. To create the application, the Global Health Institute collaborated with Epic, a private software company specializing in health care, along with some local nongovernmental organizations that collected data from refugee families during field visits that began in the summer of 2018.

The information collected included basic means of communication, profession, allergies, lifestyle habits (alcohol consumption, smoking, physical activity), medical and surgical history (including obstetrical history for women), a detailed list of any prescription and nonprescription drugs they took, vaccination history, and a mental health examination.

Gathering the information wasn’t easy. The technical challenge was to create and design an easy-to-use template that would be relevant to the health needs of refugees. At the same, the project designers needed to make sure any data collected would be highly secure and private to prevent anyone other than a healthcare provider selected by refugee patients from gaining access to it or misusing information.

While volunteers were collecting information for the project, they encountered some safety and security issues, especially when political protests broke out in Lebanon in the fall, el-Arnaout said. Traveling throughout the country was difficult as protesters often blocked roads with burning tires and other barriers.

“We participated in the program, but that will not help us in receiving basic health services here.”

Leila Mohammed
 A non-registered Syrian refugee in the Bekaa region

The volunteers who worked on collecting data also encountered social obstacles related to the sensitivity of talking to women about their health.

“Men often want to answer on the behalf of their family’s women, and they may be missing information or mentioning things that are not accurate,” said Asmaa Rassamni, founder of Malak, a nongovernmental organization that helped carry out the project in the Akkar region.

Refugees Still Lack Health Care

After collecting and recording information, each family member received a USB stick containing all their medical data in electronic format. But many who participated in the program did not think it was beneficial in helping them with their immediate needs.

“We participated in the program, but that will not help us in receiving basic health services here,” said Leila Mohammed, a non-registered Syrian refugee who is pregnant and living in the Bekaa region. “I do not have health insurance and I wish to benefit from the program by having it bear the costs of my delivery.”

Mohamed Ammar, a Syrian refugee in Lebanon and father of three children, agrees that the program did not provide them with actual assistance.

“I participated in the electronic health record, but it does not provide me with the health services I need right now,” he said. “I hope to immigrate to Europe, it might be useful there.”

He said he faces great difficulties in securing medicine and health services for him and his family. “The prices of medicine are very high and the services provided by the UNHCR are few and are subject to conditions, most of which do not apply to us,” he added. “If they apply, we must pay 25 percent of the cost.”

Beirut hospitals were reported to be refusing to give coronavirus tests to migrant workers who did not have residency documents.

Today, the program’s operators are seeking to expand their coverage in the coming stage to include more refugees.

“The project is expected to expand in its next phases to include a larger number of beneficiaries among the refugees in Lebanon, and extend it in later stages to cover those living outside Lebanon,” said el-Arnaout. “But no timetable has been set for this so far.”


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