EDRIC uses PKB to help Thalidomide beneficiaries across Europe

All EU patients are entitled to cross-border healthcare. However, there are difficulties with bureaucracy (the physician must treat using what is covered by the patient’s country, not the physician’s country); technology (there have previously been no truly cross-border medical records systems); and privacy (no system had previously complied with the EU’s data protection act across all countries).

Through our work with EDRIC, things are about to get easier for patients and clinicians. The European Dysmelia Reference Information Centre is a Swedish non-profit helping patients across Europe. Dysmelia is a generic term for a group of extremely rare conditions, for example Thalidomide syndrome, Poland syndrome and Polydactyly. This European partnership builds on our previous work with the UK’s Thalidomide Trust.

It is also part of PKB’s work with a series of rare disease cohorts, including St Mary’s Hospital’s neurofibromatosis unit, Alkaptonuria Society’s work with the Royal Liverpool University Hospital, and the Rare Genomics Institute’s work in the USA.

By working with EDRIC, PKB will be used across 12 European countries, and integrated with institutions such as Sweden’s Ex-Center. The latter is one of the world’s top orthopedic institutions.

Below is the full press release.

Patients Know Best (PKB) has teamed up with EDRIC, a European-wide membership organisation for people with Dysmelia – congenital limb differences – to help Dysmelia patients obtain the very best care wherever they live in the European Union (EU).

Using Patients Know Best – the world’s first fully patient-controlled electronic medical records system – EDRIC will help doctors comply with the patients’ country of origin requirements. Patients Know Best will host the medical records across countries and the patient control technology of the system complies with EU legislation – for the first time.

The partnership will facilitate patient access to the most knowledgeable clinicians in Europe’s top Dysmelia centres of excellence – such as Sweden’s Ex Center, a world-renowned centre for rehabilitation and information. EDRIC will also help patients to navigate complex EU insurance and legal requirements to enable cross border health care in order to obtain the best possible clinical services.

Through Patients Know Best, EDRIC captures the often highly complex nature of a Dysmelia patient’s medical history and makes it far simpler for attending clinicians located anywhere in Europe to quickly understand the interrelated nature of a patient’s health problems – improving diagnosis and treatment.

Tobias Arndt, chief operating officer of EDRIC said: “Our partnership with Patients Know Best is very important as for the first time, it will give patients with rare conditions like Dysmelia access to the very best clinicians in the very best hospitals – regardless of where they live in the EU.“

“Our members often have complex, interrelated health care needs that are often too difficult for local doctors and single specialist clinicians to tackle. Through providing clinicians with more relevant and detailed information about a patient’s medical history, we hope this new partnership will help our members help themselves to better health and better lives.”

Operating like a ‘secure Facebook’, Patients Know Best integrates fully into any medical records system, including the NHS secure network, and is available for use by any patient with any clinician anywhere in the world.  The Patients Know Best-based system enables Dysmelia patients to contact specialist doctors anywhere in Europe through a secure messaging system and ensures that a patient’s different specialist clinical teams – of which there can be many – have a single view of their medical history.

Dr Mohammad Al-Ubaydli, founder and CEO of Patients Know Best said:

“Whilst all EU patients are entitled to cross-border healthcare, so far there have been many difficulties with bureaucracy, IT and privacy. The doctor must treat using what is covered by the patient’s country – not the doctor’s country – and until Patients Know Best, there has been no way to share patient records between countries and no system which has complied with the EU’s data protection act. Our partnership with EDRIC overcomes these challenges for the first time.”

Patients Know Best has already been translated into Dutch, Spanish and German by UMC St Radboud. Working with EDRIC, the system will also be translated into Swedish, Italian and French.

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