Focusing on improving patients’ health outcomes: the role of patient organisations

ERNs are about patients. Patient organisations and, in particular, EURORDIS, have played an active role in the development of the networks for more than a decade, helping to ensure that the priorities will be to enhance clinical excellence and to improve patients’ health outcomes and equitable access to quality care across Europe. EURORDIS is a non-governmental patient-driven alliance representing 733 rare disease patient organisations in 64 countries.

‘We were there at the birth of the idea in the High-Level Working Group on Health Services and Medical Care, where ERNs were translated into the Cross-Border Healthcare Directive,’ Mr Matt Bolz-Johnson, Healthcare and Research Director at EURORDIS recalls. ‘We have walked the long road with Member States and the European Commission, from the birth of the concept into legislation, through to the germination of ERNs into reality.’

As a consistent partner in nurturing the concept of ERNs, EURORDIS has ensured patient involvement throughout and developed a strong technical understanding of how patients’ engagement in the networks can add real life value for patients.

‘Networks have the potential to unlock tangible benefits for patients with rare and complex presentations of disease,’ says Mr Bolz-Johnson. ‘ERNs will break the isolation that rare disease communities face and make experts visible to patients across Europe, magnetising patient needs to the right experts quicker.’

One of the key benefits of ERNs for patients will be their capacity to accelerate diagnosis and reduce the number of undiagnosed or misdiagnosed patients. Mr Bolz-Johnson says the networks will ‘erode the diagnostic odyssey’.

For many rare diseases, there are no currently available treatments. However, the culture of learning that ERNs promise to create will make them a hotbed of innovation. By devising simple outcome measures for specific diseases, it will open the door to faster identification and adoption of optimal medical or surgical interventions. ‘This will enhance best practice as ERN members learn from one another,’ explains Mr Johnson. ‘Experts will be able to share cases in real time through virtual meetings and review outcomes retrospectively to see what works best.’

Patients have high hope that ERNs can make a real impact on their lives: ‘We believe that thanks to sharing experience and expertise, we could make better use of existing and create new knowledge, to see significant improvements in outcomes of care for many rare diseases within years of ERNs being established,’ Mr Bolz-Johnson says. ‘Now it is time for ERNs to deliver.’