European clinicians treating over 30 million people who suffer from rare and complex diseases are reaping the benefits of European cooperation. A new system developed by Irish health informatics company OpenApp for the European Commission now allows secure online consultations with leading specialists across Europe.
Commissioned as a key project by the European Commission’s, Health and Food Safety Directorate-General, 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 nature of rare and complex diseases is such that specialist knowledge is scarce and fragmented and therefore may be unavailable in the patient’s region or country.
“The CPMS allows clinicians to create virtual panels and invite experts from over 900 centres of excellence around Europe. 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.” Explained Con Hennessy, Managing Director, OpenApp.
“The participating experts give their feedback and discuss the patients’ diagnosis through online meetings and instant messaging all using the secure platform.”
1 in 17 people live with a rare disease
1 in 17 people live with a rare disease. There is no cure for the majority of rare diseases and many 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.
This is where the CPMS truly helps.
“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.” Hennessy explained.
The ERNs are networks of hospitals which are centres of expertise. There are 24 ERNs in total which are divided into thematic areas of expertise – lung, skin, child cancer, eye, bone disorders, immuno-deficiencies, inherited and congenital disorders and many more – which have over 900 highly specialised healthcare centres from over 300 hospitals across 26 countries. These networks are expected to grow in the coming years to bring in even more expertise from across Europe.
The ERNs were launched in March 2017.
“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. ” Hennessy said.
Founded in 2002, OpenApp, a healthcare IT company that has grown to nearly 50 employees, are blazing a trail to support the rare disease communities.
It is no stranger to facilitating the secure and confidential exchange of patient information across borders. Diseases including Cystic Fibrosis, Tay Sachs, Alpha 1, SMA, Haemophilia, Irish National Orthopaedic Register, (INOR), Interstitial Lung Disease and several in Dermatology have all benefited by using OpenApp developed registries.
They are also the developers of 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/improvement and research potential of available data.
From Ultra Rare Disease to Multinational Pharmaceuticals
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.
“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.” explained Sara Viegas, OpenApp Product Line Manager for Clinical Insight
“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.”
Hennessy concluded, “It’s not every job that you go into where you know you make a difference. It’s humbling how our systems are making a difference in rare disease and healthcare research. Our software helps policy makers make informed decisions, helps pharmaceuticals hone life saving drugs, helps clinicians create treatment plans and finally give hope to patients that their data is helping advance research for their ultra rare, rare and chronic disease.”
Based in Dublin, OpenApp is a software development and support business focused on the healthcare sector. In business since 2002 and with a staff of nearly 50, OpenApp have strategically positioned themselves into the eHealth, Patient Registry and Patient Health Record area since about 2012 with deployments for the European Cystic Fibrosis Society Patient Registry, The Irish Skin Foundation, The National Office for Clinical Audit National Orthopaedic Register, an International Haemophilia Study and more.
OpenApp has developed and supported Health Atlas Ireland for the Irish Health Service Executive since 2006, a collection of Quality Assurance, Health Intelligence and Service evaluation applications for hospital and public health use.
It has grown its team from 4 in 2002 to nearly 50 in 2018.
Health systems in the European Union aim to provide high-quality, cost-effective care. This is particularly difficult however, in cases of rare or low-prevalence complex diseases which affect the daily lives of around 30million EU citizens.
European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to facilitate exchange among clinicians on complex or rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources. Launched in 2017 with the support of the European Commission, they cover 24 thematic areas.
Rare diseases are those that affect no more than 5 in 10 000 people. Taken together, between 6 000 and 8 000 rare diseases affect the daily lives of around 30 million people in the EU – many of whom are children. Rare and complex diseases can cause chronic health problems and many of them are life-threatening. For example, there are almost 200 different types of rare cancers alone and each year more than half a million people in Europe are diagnosed with one.