Patients hold the key to better research, better healthcare and better outcomes.
“UCAN Ireland welcomes the publication by IPHA of important new clarity on patient advocate access at medical conferences, now live on the IPHA website.
The guidance makes clear that while there is a legislative basis for restricting non-Healthcare Professional access to promotional areas at conferences, this should never be used as a reason to exclude patient advocates and other non-HCP delegates from valuable non-promotional scientific sessions or communal spaces.”
’Patients’’ includes:
“Individual Patients” who are persons with personal experience of living with a disease. They may or may not have technical knowledge in R&D or regulatory processes, but their main role is to contribute with their subjective disease and treatment experience.
“Patient Advocates” who are persons who have the insight and experience in supporting a larger population of Patients living with a specific disease. They may or may not be affiliated with an organisation.
“Patient Experts”, who, in addition to disease-specific expertise, have the technical knowledge in R&D and/or regulatory affairs through training or experience.
“Patient Organisation Representatives” who are persons who are mandated to represent and express the collective views of a patient organisation on a specific issue or disease area.
“Carers”, who are persons supporting individual Patients such as family members as well as paid or volunteer helpers.
Lynch Syndrome Ireland 