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Public And Patient Involvement

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Public And Patient Involvement

PARADISE has the potential to improve the quality of life of many patients with AAV.

A team of patient and public participants (PPI) will take part in PARADISE, representing diverse backgrounds (in terms of sex, age, educational attainment, familiarity with technology, urban/rural dwelling). Additional training, advice and template documentation resources are available from Ireland’s national public-and-patient-involvement (PPI) network, PPI Ignite (ppinetwork.ie).

In PARADISE, the PPI Roles include:

Patient experience in PARADISE will feed back into RIPAG and ERN RITA, informing policy at the EU level in a manner similar to recent policy initiatives in new-born screening programmes, through our hands-on experience of technology-enabled personalised medicine.

Formation of a patient focus groups (PAG = Patient Associated Group) and stakeholder groups that provide input to all patient-facing materials (consent forms, AI transparency notice, communication materials, website, patient-app user interface and documentation)
Patient perspectives on project activities, results and dissemination
Evaluation and feedback on patient acceptability of the PARADISE clinical tool
Evaluation and feedback on the usability of the patient Mpower app
Co-authorship of white paper and academic manuscripts on the use of AI in personalised medicine for AAV

What is PPI? What does the PPI Group do?

AI From the Patient’s Perspective

This lighthearted video/rap song, created by the Patient Advisory Group of Paradise Project, brings a fun, engaging twist to a serious topic—how artificial intelligence can help improve patient outcomes. The rhyming text and illustrations capture the hopes, concerns, and trust that patients have in AI’s potential to revolutionise healthcare. It’s a creative, non-academic take on the future of medicine, blending humor and insight as patients reflect on how AI can be a trusted partner in their care. Watch, laugh, and feel confident in the future of patient-centered AI technology!