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.

Dr Purity Mwendwa is a postdoctoral research fellow in the School of Nursing, Midwifery and Health Systems at University College Dublin (UCD) in Ireland. Her PhD is in global health and her research interests are in the social determinants of health in the context of Africa and among immigrant communities. Her research portfolio is influenced by her experiences growing up in Kenya and those gained working and travelling in various parts of the world. She has expertise in qualitative methods and community-based participatory research based on her extensive work engaging diverse communities in research, education and practice development.

Here, Purity speaks to Dr. Nora Lieggi (the former programme manager) and Prof Thilo Kroll site lead for the PPI Ignite Network @ UCD about her experience of PPI in sub-saharan Africa.

Dr Nikki Dunne joined Family Carers Ireland in March 2019. Family Carers Ireland is the national charity supporting the 500,000 family carers across the country who care for loved ones such as children or adults with physical or intellectual disabilities, frail older people, those with palliative care needs or those living with chronic illnesses, mental ill-health or addiction. Family Carers Ireland is also a partner of the PPI Ignite Network @ UCD. As the organisation’s research manager, Nikki leads Family Carers Ireland’s programme of research and manages a diverse range of qualitative and quantitative projects relating to family carers. She is particularly focusing on building and coordinating research involvement and engagement among family carers, researchers and other stakeholders.

Here, Nikki speaks to Dr. Nora Leiggi the former programme manager for the PPI Ignite Network @ UCD about carer involvement and the experience of building the PPI family carers network at Family Carers Ireland.

Prof. Thilo Kroll is the site lead for PPI Ignite Network @UCD, part of the HRB funded National Network on Public and Patient Involvement in Health and Social Care Research (2021-2026).

Since 1992 Thilo has been conducting research into the social dimensions of health and well-being with a particular emphasis on public health perspectives on disability and health topics. Thilo’s  background in psychology has led to a variety of interdisciplinary research studies combining quantitative and qualitative research methods with a particular emphasis on inclusive research designs for otherwise marginalised groups. His research interests and passion are focused on systems-related topics in global public health and inclusion.

Here, Thilo talks to Dr. Nora Lieggi, the former programme manager for the PPI Ignite Network @ UCD about the basics of PPI and tells us his own journey into PPI