Patients Know Best Enables European-Wide Specialist Care Access For Rare Disease Patients

Posted on Thursday 16th January, 2014

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 controlled 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. 

Notes to editors
ccessing cross-boarder healthcare challenges discussed here:
More information on Sweden's Ex Center here:

EDRIC - the European Dysmelia Reference Information Centre - is a pan-European, not-for-profit-organisation registered in Sweden.  It is governed by a board of seven individuals, six of whom have lived experience of Dysmelia. 
EDRIC has 23 member organisations and members of its Dysnet webservices in 19 countries representing about 3 000 individuals. 
Dysmelia is a generic term for a group of extremely rare conditions - for example Thalidomide syndrome, Poland syndrome and Polydactyly.  The DysNet website () has a full list of conditions. 
DysNet is on Facebook, Twitter, LinkedIn, YouTube and Google+.  It also has a multi-lingual (EN, DE,IT, FR, ES) forum, RareConnect, hosted by EURORDIS and NORD, the European and North American rare disease umbrella bodies. 

About Patients Know Best
Patients Know Best is the world's first patient-controlled medical records system.  It is a fully secure online tool which enables patients to better organise, manage and control their own health care provision - it also saves the time of physicians through allowing secure, online consultations.  Founded by Dr.  Mohammad Al-Ubaydli, a physician, programmer and expert in IT in healthcare, Patients Know Best has won social enterprise awards for its focus on patient care.  Patients Know Best's first customers include Great Ormond Street Hospital, St Marks Hospital and NHS South Devon.  Patients Know Best integrates fully into the NHS secure network and is available for use by any patient with any clinician anywhere in the world.  It is now used by over 30 hospitals in the UK, USA, Holland, Australia and Hong Kong.  Patients Know Best complies fully with UK NHS and data protection requirements as well as the EU data protection act and US HIPAA legislation for dealing with medical data. 

Chris Smith, Swarm Communications,
0044 7989 321 743

Dr Mohammad Al-Ubaydli, Patients Know Best
0044 7724 189 415

EDRIC's Media Manager
Caroline George
+44 7715 559125

EDRIC's Chief Operating Officer
Tobias Arndt
++32 483 736 519



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