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The challenge of providing equal access to care - will EuroBlodNet make a difference?

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María Manu Pereira

14 August 2018

What are European Reference Networks?

The European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. Their principal objective is to facilitate the lives of around 30 million EU citizens affected by rare diseases. Indeed, they aim to spread knowledge on complex and rare diseases that require highly specialised treatments and to provide high-quality, cost effective care. There are 24 ERNs covering 24 different clinical areas. They were officially approved by the European Commission (EC) on December 2016 and started their activity the 1st of March 2017. They involve more than 900 healthcare units from over 300 hospitals in 26 EU countries.  

What is the ERN EuroBloodNet?

The ERN-EuroBloodNet is the European Reference Network on Rare Hematological Diseases: a collaborative network of 66 healthcare providers located in 15 member states that brings together individuals and institutions committed to improving healthcare services in Rare Hematological Diseases.

EuroBloodNet results from a joint effort of the European Hematology Association (EHA), the European Network on Rare and Congenital Anaemias (ENERCA), the European hematology patient organisations represented in both the EURORDIS European Patient Advocacy Groups (ePAGS) and the EHA Patient Organisations Workgroup.

EuroBloodNet encompasses oncological and non-oncological rare hematological diseases including rare anemias, rare coagulation disorders, polycythemia, and myeloid and lymphoid tumors. Rare hereditary hemochromatosis was also included in our network following a request from well-established patient groups and experts.

 Which is your actions’ plan to provide an equal access to care?

We strongly believe that to give equal and highly qualified access to care at a European level means to maximizing the cost-effective impact on rare hematological diseases. We are actually establishing a referral system for patients and samples in order to ensure the same level of access to healthcare across Europe. We are also compiling, assessing and creating the implementation of best practices. In fact we would like to disseminate guidelines in RHD. Then, we aim to spread awareness onrare hematological diseases, so we have an educational program to be addressed to healthcare professional and nonprofessional too. We are facilitating cross border consultation by sharing expertise and safety exchange of clinical information. We are planning to foster European cooperation for epidemiological surveillance, development of high specialized procedures for diagnosis, innovative treatments and research.

All these objectives are summed up in 5 TFAs (Transversal Field of Action: 1) Cross Border Health, 2) Best practices, 3) Continuing Medical Education, 4) Tele-medicine, 5) Clinical Trials and Research.

 What makes the equal access to care possible?

The equal access to care at an European level is guaranteed thanks to the Directive 2011/24/EU adopted by the European Union regarding the application of patients’ rights in cross-border healthcare and including article 12 regarding the establishment of ERNs.

Concerning the Cross Border Health establishment three basic actions have been settled: the first one implies the mapping of services (clinical and diagnosis) available in Europe for the best clinical care. A repertory of patient organizations has been launched too. The second one is directed to establishing a model for cross border referral system for patients and samples in accordance with Directive 2011/24/EU. The third one points to disseminate the policy report at the EU and national levels to foster policies and addressing specific needs.

Which are the obstacles you could experience in Cross border health?

For making highly specialized services available to everyone, that is to say to establish a solid Cross Border Health  system, it is necessary to analyze some legal issues, such as: patient’s rights and access to CBH services, data protection and safe and security exchange of data, rights and duties of health professionals involved in cross border health services.

Then, to avoid obstacles it is also important to test some health services which are suitable for reimbursement at Member State level. Finally, it would be also important to produce a Pan European framework for the exchange of human sample for diagnosis and research.

Which are the obstacles that a patient could experience in Cross border health?

There could be some difficulties in the administrative process of reimbursement between Members States. It could be needed a prior authorization in the case of night accommodation in hospitals or in demanding of cost-intensive services. It could be very time and cost consuming. Plus, some medical procedures are very expensive and rarely affordable by a patient. It would be better to guarantee a reimbursement procedures settle between institutions (hosting and home country) and not between the hosting institution and patient. Then the Directive 2011/24/EU has no impact on the rights of each Member State to determine which health benefits they will provide. Thus, if a particular treatment is not reimbursed in a patient’s home country, it will not be reimbursed if accessed in another Member State. Member States would be able to require prior authorization for “hospital care” and reimbursement would match the amount that patients would receive in their home country.

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