On this special extended edition of Ignite Involvement we welcome Nerilee Ceatha, Ayrton Kelly and Tara Killeen. Nerilee Ceatha is a SPHeRE PhD scholar at UCD exploring protective factors that promote LGBTI+ youth wellbeing. They met Ayrton and Tara through their work on the oversight committee for the Irish LGBTI+ National Youth Strategy Strategy.  

Ayrton Kelly was a member of the Youth Advisory Group (YAG) and oversight committee for the Strategy. He represented the YAG on the subgroup ‘Connected, respected and contributing to their world’. 

Tara Killeen was also a YAG member and the YAG representative on the subgroup ‘Safe and protected from harm’.

Together, they have co-authored a book chapter [Visible, valued and included: Prioritising youth participation in policy-making for the Irish LGBTI+ National Youth Strategy] and a number of research publications together. 

Here, Nerilee, Aryton and Tara speak with Dr. Emma Dorris, programme manager for the PPI Ignite Network @ UCD, about LGBTI+ youth involvement in both policy and research.

Prof Rachel Crowley is a consultant endocrinologist at St. Vincent’s University Hospital and University College Dublin School of Medicine. Her research typically focuses on rare bone disorders. Prof Crowley leads the recently awarded rare disease clinical trial network (RD-CTN), a HRB research network to enhance rare disease care and outcomes. Public and patient involvement is growing rapidly in the rare disease space and PPI is an integral part of the RD-CTN.

In our last episode of the series, Rachel speaks to Dr. Emma Dorris, programme manager for the PPI Ignite Network @ UCD, about how she started out with PPI and how she is growing PPI in the clinical trial space for rare diseases. She gives some excellent advice for clinical colleagues just starting out with PPI.

Maarten de Wit and Denis O’Sullivan are PPI contributors involved in the international HIPPOCRATES project. HIPPOCRATES is led by Prof Oliver Fitzgerald (UCD School of Medicine). HIPPOCRATES goal is to promote the early identification and improve outcomes for patients with psoriatic arthritis. Patient representatives from three organisations have joined the consortium to ensure the patients’ perspective is preserved and prioritised in all research activities to maximise the project’s impact. Maarten and Denis are two of these patient representatives. Maarten de Wit is from the Netherlands and has more than twenty years experience as a PPI contributor. Denis O’Sullivan is from Ireland and has been involved in PPI for psoriatic arthritis since 2010.

Here, Maarten and Denis speak to Dr. Emma Dorris, programme manager for the PPI Ignite Network @ UCD, about their involvement in this large international consortium and how PPI has changed over the years.