When Patients Know Best was contacted by a healthcare charity to help set up an electronic health records system for displaced refugees in Greece, it was immediately evident what this would mean for them – and to us.
When all you have is the chance to survive, what could possibly matter more? For the refugees caught up in the war of Libya, Afghanistan and Syria, forced to flee their homes with nothing more than the memories of a better yesterday, for most, the clothes on their back are all they have when they arrive at Moria Camp. In Lesbos, Greece, this is Europe’s largest refugee camp, designed for 3,000 refugees but currently housing nearly 18,000 people.
Supposedly a ‘safe haven’, Moria is bursting. Where food and shelter is a precious commodity, access to healthcare seems far-fetched. Yet, there is some hope. Kitrinos Healthcare is a charity set up under the direction of Dr Siyana Shaffi, a general medical practitioner who started working as a volunteer in Greek refugee camps in October 2015. This group of international medical and non-medical volunteers, provide healthcare in a make-shift clinic in Moria Camp where thousands of people are currently trapped.
Through the kindness of individuals and volunteers, astonishingly they have access to some much-needed equipment including emergency resuscitation kits, an ECG and portable ultrasound machine. The medical staff are clearly devoted to the care and comfort of their patients. Yet without access to patient health records, they rely on people’s personal accounts of their medical histories. It seems here, patients really do ‘know best’. Those who are fortunate enough to have a paper record guard it with their lives, knowing it’s importance for getting the medical assistance they need.
With nothing more than a basic system created themselves, the Kitrinos Healthcare team were very aware of the pitfalls, especially in terms of governance and protecting patient data, which by the very nature of the circumstances the refugees face, has to be protected.
“We were looking for support to set up an electronic health records system in this humanitarian setting and that’s when I came across Patients Know Best”, says Dr Shaffi.
“Every day, I see the inefficiencies and dangers of patient data that is not available or incorrectly handled. We’re working out of a camp to provide healthcare and all the time, collecting important data (sometimes left on bits of paper) and struggling with an effective way of sharing this”, she added.
There are also language barriers and challenges around differing terminology – both reasonably expected with refugees from more than a dozen nationalities and a team of volunteers from all over the world. However, with a platform internationally recognised for its governance standards and available in 20 different languages, some problems were relatively easy to overcome.
Dr Shaffi continues, “I was extremely impressed and blown away by the generosity shown by Patients Know Best (PKB). They offered to donate a custom-built platform and swiftly created our test site. Before we knew it, we were ready to go live!”
For the displaced refugees who not only have to build their lives again but their health records too, “PKB is the greatest gift you can give these people”, says Dr Shaffi.
She adds, “We are pioneering patient-held and owned health records in a humanitarian setting. This will make life easier for everyone. Data will be accurate and used more interactively. We won’t have to handle information twice or write paper notes only to manually enter them again on our computer system. However, above all, these refugees will have a secure, organised record to take with them to their next destination to facilitate safer, more personalised care.”
Growing up in Lebanon during the civil war, CEO and Founder of Patients Know Best, Dr Mohammad Al-Ubaydli, knows only too well the challenges these refugees are facing. He said, “My family left Beirut on a boat while the city was being bombed. We arrived at the safety of Cyprus and eventually the U.K. My mother carried my medical records, critical to me as a patient with a rare disease. I understand a little of the horrors these refugees faced before coming to Greece. This is why it’s personally important to me that Patients Know Best contributes to the efforts of Kitrinos Healthcare. They are an amazing organisation delivering for their patients in such difficult circumstances. It’s a real honour to support and work with them.”
Refugees in Moria Camp will soon have secure access to their newly created personal health records with Patients Know Best. This will contain details of any conditions, test results, medications and information about future care planning and treatments, offering personalised care to these patients once again.
This initiative is central to PKB’s values and mission as a social enterprise and B Corporation. Through all our work, we strive to ensure that every person, regardless of their personal circumstances, has the ability to access their personal health record, control who can see it and use this to better manage their health and care, no matter where they are.
Please help make a difference!
Kitrinos Healthcare relies on the generosity of public donations to continue providing vital health and care to support for our refugee friends in Moria Camp. Please make a difference by donating to one of their many wonderful appeals such as ‘the winter appeal’, helping to keep refugees warm this winter. Click here to find out more.