Denis Naughten (Roscommon-Galway, Independent) | Oireachtas source

Even after the tortuous road to diagnosis, patients in many instances have to educate the doctors who are treating them. That is because the expertise does not exist in Ireland for many of the conditions, due to their rarity. To address this, the EU cross-border directive mandated the establishment of the EU reference network to link rare disease clinicians right across the EU. Irish doctors participate in 18 of these 24 networks. To ensure our continued participation in the existing networks as well as the six remaining networks, we need to modernise our patient registers and establish electronic patient records. This will allow our patients to access the latest research and drug trials and assist in policy development. As the Taoiseach knows, the electronic health record programme has been paused until the new children's hospital health record programme is implemented. This seriously threatens patients' access to these vital EU networks and our participation in the emerging European health data space being developed at EU level.

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