Award for the Irish Platform for Patient Organisations, Science and Industry

Lead Researcher:

Ms Eibhlin Mulroe

Award Date:

1 January 2013

Host Institution:

IPPOSI

Scheme:

Irish Platform for Patient Organisations, Science and Industry

Summary:

IPPOSI brings together patient groups, scientists, clinicians, industry and other key decision makers to discuss and build consensus on issues relevant to delivering treatments to people with unmet medical needs. On behalf of the DOH, the HRB has been co-funding IPPOSI with between 40-50% of their annual income since 2007. The remainder of their income is generated from industry members, as well as various small sources of income. IPPOSI currently has a membership of 80 patient organisations and medical charities (including 32 new members over the last 12 months), 48 science members and 14 industry members. The main activities include:
• Providing information for patients and other stakeholders and coordinate feedback into relevant decisions (e.g. hold briefing and coordinate membership submission for the consultation process around the update of the EU clinical trials directive, briefing re health information bill, etc.)
• Providing a patient perspective on national steering groups, (e.g.  DOH Steering Group on Rare Diseases, HIQA research ethics advisory group)
• They are also funded by the European Commission to participate in the European Union Patient Academy for Therapeutic Innovation (EUPATI).