A revolutionary scheme to provide refugees with secure health records on their mobile phones could have profoundly positive effects not only within the camps, as Tjaša Zajc explains
‘When you talk to refugees, healthcare and education often get pushed to the side due to the immediate relief need,’ says Melissa Mitchell, CEO of the non-profit organisation Walk With me, which operates in six countries in the Middle East. Despite healthcare not being the primary focus for refugees, availability of medical care is important for their health, quality of life and the future. Many have chronic conditions but lack adequate care. ‘Data collection is at the moment extremely simple – often recorded on Excel sheets, and inaccurate due to name spelling, guesses at birth dates, multiple entries for the same patient, all of which skews data,’ says Mitchell. Soon storing and using medical records will improve thanks to the collaboration between Walk With me, a Dubai-based telemedicine company Ver2 and the Slovenian healthcare blockchain company Iryo.
In 2017, Ver2 Founder and CEO Brian de Francesca joined the Walk With Me team on a trip to the Syrian refugee camp in the Bekka Valley, Lebanon. The intention was for him to support two doctors by providing administrative and triage functions. ‘One young Syrian girl had a large rash on her face that the two doctors couldn’t diagnose. It had been there for many months. I took a picture of the rash with my smartphone and sent it to a German dermatologist working in Dubai. Two hours later, the doctor replied with the diagnosis and treatment plan – which was nothing more than a simple cream that could be purchased in the town nearby,’ reveals de Francesca. He quickly saw that a tremendous benefit could be provided to the refugees by using basic telemedicine technologies. However, de Francesca knew that secure, accurate and authenticated medical records would be essential to any scheme’s success. That’s when he introduced Iryo to Walk With Me, and discussions about creating the world’s first cloud-based blockchain-enabled patient-owned record system began.
In January 2018 the CEO of Iryo, Vasja Bočko, visited one of the camps in Lebanon to assess the viability of the idea, which is to design a system where patients control their own medical records stored on their mobile phones. ‘Patients in refugee camps typically have one smartphone per family, generally with a 3G-enabled data connection. Because refugees can store health data on their mobile phones, they could take their medical history with them when starting a new life elsewhere. Their follow-up doctors will be able to provide better continuous care with patient-centric data-driven decision making,’ says Bočko.
Providing care in refugee camps is challenging to say the least. Funding of care is difficult, turnovers of healthcare workers high. Some doctors work in camps for as little as six months, as they are mostly volunteers or doctors identified in the refugee population.
More than 65 million refugees have fled war to escape death. Over half are children who are ill, malnourished and at risk of exploitation.
‘Some of our clinics keep paper records, but those systems are highly dependent on the doctor or nurse who set them up, and they are only in Arabic. Doctors who want to help remotely have little or no access without direct consultation with the doctor. If we want consistent care, we have to have a simple system where we can access data and records,’ explains Mitchell.
It’s not just about the doctors; patients are those that could benefit most from a different system, supported by technologies. The inconvenience of legacy IT solutions for patients was the underlying motivation for creating Iryo, as its founders are IT experts and engineers specializing in optimization of work processes and enterprise solutions convenient for end users.
During the research and the discussions on how to improve the patient experience in healthcare, the founders of Iryo came to the conclusion that to build a better system, the process needed to be reinvented from the ground up. Patient data gathering could not be solved simply, but with a redefinition of the whole system: including standards, medical software and storage. The way they imagined the system working was by storing all of the patients’ data safely in a mobile app – an issue being grappled with all over the world. Thanks to blockchain technology, each attempted access of the patient’s data is recorded. The patient can revoke access to already authorized parties if they want to. The critical thing for the user is the convenience of having portable medical records within reach.
Secure mobile health records would mean better access to care for refugees. ‘It will make it easier when seeking care. Often refugees have to visit several sites to get the help they need. At the moment, they carry small slips of paper with doctor notes, or X-rays, or lab-work for each doctor to review. These are just snapshots of the current treatment or diagnosis with no access to prior medical history. So having full medical records would be extremely valuable, especially when we think about immunization schedules when people migrate through multiple countries,’ says Mitchell.
Walk with me currently operates 12 projects in Iraq, Syria, Jordan, Lebanon, Egypt and Djibouti helping 11 million refugees. Additional clinics are planned for Jordan, Lebanon, Syria, Iraq, Pakistan and Turkey, with a long-term vision of reaching 700 camps worldwide. Providing these sites with an IT infrastructure will help improve the quality of healthcare for refugees while in the camp and beyond. ‘The longitudinal medical data that’s collected within the five to seven years that refugees traditionally spend in camps will help to ensure better access to healthcare and undoubtedly improve their overall quality of life,’ says Vasja Bočko.
Refugees are one of the most vivid examples of the importance of medical data being accessible to the patient first. All across the world, patients currently have little or no power over access to their own records. Furthermore, medical data is scattered across different institutions among different care providers – all struggling with a lack of interoperability. Medical experts consequently do not have an accurate picture of their patients. Doctors have no option but to work with incomplete information about an individual’s medical history, medication and needs when treating people abroad, for instance. Applying blockchain technology could change everything.
Initial use of the Iryo system will begin in refugee camps located throughout the Beqaa Valley of Lebanon, soon followed by implementation in other countries. Over the coming year, Ver2 will expand the service scope to include teleconsultations, education, physician support and more. As for Iryo, this is only the beginning. Access to medical data by patient first is, after all, a much-needed global paradigm shift.
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