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 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:
- 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)
PARADISE has the potential to improve the quality of life of many patients with AAV.
A team of patient and public participants 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
Presentation of the Patient Associated Group actions:
Patient and Public Involvement-Catholic University of Croatia (youtube.com)
Meet our PAG members !
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