OpenApp ‘virtual panels’ to help diagnose patients with rare diseases

Pawel Stawarz and Con Hennessy, OpenApp



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7 September 2018 | 0

A new system developed by Dublin health informatics company OpenApp for the European Commission now allows secure online consultations with leading specialists across Europe.

The Clinical Patient Management System (CPMS) is a secure system designed specifically to help in the diagnosis and treatment of patients with rare and complex diseases. It is the IT tool on which the newly created 24 European reference networks (ERNs) can rely to remotely work across Europe on patients affected by rare and complex disease.

“The CPMS allows clinicians to create virtual panels and invite experts from over 900 centres of excellence around Europe,” said Con Hennessy, managing director, OpenApp.

“Using the secure platform, clinicians can share clinical details, medical images and other patient documents for treatment and diagnosis. Incorporated into the platform are also many of the advanced tools experts would expect to be available in their day-to-day work.”

“The participating experts give their feedback and discuss the patients’ diagnosis through online meetings and instant messaging all using the secure platform.”

One in 17 people live with a rare disease, many of which go undiagnosed or do not find the appropriate treatment. For some diseases, there is a just a smattering of patients, and the geographic dispersion as well as the low numbers makes treatment difficult, if not impossible.

Hennessy said: “Using the CPMS, data is shared across borders in the European Union. In this way, the medical knowledge travels and not the patient. Before the ERNs & the CPMS, the patient would usually only have access to national experts or would have to travel, taking exhausting trips frequently at their own expense. This advancement is of immense benefit to the families and patients.

“While this is a game-changer for diagnosis and treatment, it is a new departure for care. Many clinicians across Europe would not use telemedicine or digital technology between hospitals and definitely never before between countries. The clinicians are embracing the technology enthusiastically.”

The company are also developed the Health Atlas, together with HSE Health Intelligence Unit, a health intelligence analysis platform which supports the quest for better health by exploiting the quality assurance and research potential of available data.

OpenApp’s registry platform, Clinical Insight, has been deployed in patient organisations from ultra rare diseases with populations of less than 100 to global pharmaceuticals companies providing rare disease drugs.

Sara Viegas, OpenApp product line manager for Clinical Insight, said: “What our platform allows is for improved connection and collaboration. In a secure environment, the platform which is fully GDPR compliant, data is protected so that patients can securely connect with clinicians and vice versa.

“Policy makers, pharmaceuticals, even universities can use the platform to help understand more about diseases, develop treatments and improve diagnosis. Using and understanding patient data is vital to improve the health of all patients with rare disease. Patient Data is no longer in a silo and the powerful benefits of this information can be realised.”

OpenApp employs a staff of nearly 50, with deployments for the European Cystic Fibrosis Society Patient Registry, The Irish Skin Foundation, The National Office for Clinical Audit National Orthopedic Register, an International Hemophilia Study and more.

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