December 17, 2021

PID Forum: Digitalisation of Healthcare

At the beginning of December IPOPI organised its 19th PID Forum on the topic of Digitalisation of Healthcare: Improving medical care for PID patients. The well attended event was co-chaired by Members of the European Parliament, Carlos Zorrinho (S&D, Portugal) and Marina Kaljurand (S&D, Estonia).

For patients with PID, digitalisation in healthcare is of significant importance. Considering the publication of the EU’s Digital Strategy and the upcoming creation of a European Health Data Space, as well as the digital changes to care during the COVID-19 pandemic, the timing could not have been better for an in-depth exchange of views on the impact and potential of digitalisation for PID patient care and research.

The forum was moderated by Mr Johan Prevot, Executive Director of IPOPI, and had the participation of Ms Martine Pergent, IPOPI President, Prof Mikko Seppänen, Chair of the ESID Registry, Prof Nicholas Rider from the Texas Children’s Hospital, Prof Mark Little from Trinity College Dublin, Dr Nizar Mahlaoui from Necker-Enfants Malades Hospital Paris, Mr Friedolin Strauss from the German PID patient organisation Deutsche Selbsthilfe Angeborene Immundefekte e.V. (DSAI) and Prof Isabelle Meyts, ESID President.

During the Forum, a set of policy recommendations for harnessing the potential of digital tools while balancing patients’ rights to both privacy and healthcare was established. These will be essential in addressing the needs of the PID community through legislation and will be shared with PID stakeholders and policy makers, once final.

IPOPI is very pleased with the event and thankful for the support that was shown for patients with PIDs, as well as the insightful and future-looking discussions. We look forward to taking the policy recommendations’ list further and to using our discussion to advocate for increased PID-relevant policy in the digital health environment.

The recommendations and a full meeting report will be published on IPOPI’s website.