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National PPI Festival 2025

National PPI Festival 2025: Celebrating our History, Embracing our Future

The fourth year of this nationwide celebration took place under the theme “Celebrating our History, Embracing our Future.” That year’s festival built on the strong foundations of previous years, honoured the progress made to date, and looked ahead to new and exciting possibilities for Public and Patient Involvement (PPI) in research.

The PPI Ignite Network @ University of Galway was delighted to launch its second National PPI Festival Fund, which offered support to assist University of Galway staff or students, patient & community organisations, and individual PPI contributors to host a National PPI Festival event in October that aligned with the festival’s aims.

We successfully supported 6 events in a variety of ways, including refreshments and catering, design and print, creating accessible information, venue hire, PPI contributor involvement, and equipment hire. That year’s festival reflected our University’s ongoing commitment to excellence in PPI, highlighting how connection, creativity, and collaboration continued to drive progress.

Tuesday, 14th October

Hope ICU Voices: From Bedside to Breakthrough

The PPI contributors and the Research Staff  of Hope ICU Voices event

A special in-person gathering where ICU survivors, family members, carers, researchers, and health care professionals came together to connect, share, and learn from one another. This was an open and supportive space where patients and families could share their ICU experiences, talk about what mattered most to them during their care, and reflect on the journey of recovery. We also wanted to hear their thoughts about ICU research — what they felt was important to study, and their views on new and upcoming projects. This event created a space for connection, conversation, and creativity — where patients, families, and staff came together to transform lived experiences into research that kept patients at the heart of care.

The Critical Care Cluster from the Clinical Research Facility Galway hosted the HOPE ICU Public and Patient Involvement (PPI) event. The session was designed not only to highlight current ICU research initiatives but also to empower participants to share their lived experiences, ensuring that future research priorities and methodologies are informed by those directly affected by critical care.

For more details contact Celia Thomas at: celia.thomas@universityofgalway.ie 

Thursday, 16th October

On the PPI Journey – Lessons from the past, stories from today, aspirations for the future. 

Hybrid - Institute of Lifecourse And Society, University of Galway, H91 C7DK

A photo of most of the people involved in the 'On the PPI Journey' event

PPI was explored through the lens of the PPI contributor and the public, during the day-long event, On the PPI Journey. The event programme was developed by the PPI Ignite Network’s Public Advisory Board (PAB). Powerful opening and closing key-note presentations from two PAB members, contributions from youth researchers, and panel discussions demonstrated how people from many different walks of life are making a real difference in health research and improving healthcare. Attendees were treated to an honest and inspiring conversation on the progress made and the challenges encountered On the PPI Journey, and to a look at the next steps on the road ahead.  

Have a look at their recorded event here

 

If you would like to find out more about this event, please email hello@ppinetwork.ie

Friday, 17th October

From Numbers to Narratives: Understanding Health Research Through Data

Hybrid - The Biomedical Science Seminar Room, BMS-G020, University of Galway

Everyone attending the event

This hybrid workshop, held as part of the National Public and Patient Involvement (PPI) Festival 2025, brought together researchers, clinicians, patients, public members, and digital health innovators to explore how we can bridge the gap between data and meaningful, patient-centred care.
The session featured thought-provoking talks, a powerful product demo, and an energising roundtable discussion that highlighted how meaningful PPI can shape health data projects, strengthen co-design in healthcare, and inspire innovation. Topics included the co-development of digital health dashboards for national care experience surveys and the integration of patient voices in the development of wound-care technologies.
Importantly, the workshop also explored the critical role of statistical methodologies in advancing PPI, including how statisticians and data scientists can help make health data more transparent, trustworthy, and relevant to patients and the public. Through discussions on building trust, designing inclusive digital tools, and improving the communication of uncertainty and findings, participants reflected on how patient involvement can enhance the analysis and interpretation phase of research, making outcomes more meaningful and equitable.
The event was organised by Dr. Nastaran Sharifian, Postdoctoral Researcher in Statistics at the School of Mathematical and Statistical Sciences, University of Galway, with the support of Professor Andrew Simpkin.
Speakers included:
  • Dr. Mona Isazad Mashinchi (University of Galway), who spoke on embedding PPI in national care data projects
  • Dr. Emer Garry, Project Manager at FeelTect, who presented on integrating patient perspectives into innovative wound-care technologies
The roundtable discussion, supported by the PPI Ignite Network team, created space for collaborative thinking across diverse perspectives, including statisticians, technologists, and patients.
If you would like to find out more about this event, please email: Nastaran.sharifian@universityofgalway.ie  
Thursday, 23rd October

Breaking through the Pain Barrier: Insights on Abdominal Pain in IBS and IBD

Human Biology Building, University of Galway

All presenters at the breaking through the pain barrier event

This interactive event brought together patients, gastroenterology healthcare professionals, and pain researchers to explore abdominal pain in IBD and IBS - from the lived experience to the laboratory bench. Speakers on the night included Victoria Spillane (COO Crohn's & Colitis Ireland), Emma Barry (PPI Contributor), Prof Laurence Egan (Consultant Gastroenterologist), Prof David Finn (Pain Neuroscientist and Pharmacologist) and Rebecca Lane (PhD Student researching pain in IBS and IBD). The evening created space to share information and diverse perspectives on pain in IBS and IBD, highlighted research at the University of Galway investigating the body’s own cannabis-like system in relation to abdominal pain, offered the public a first-hand look at the cutting-edge facilities that make this research possible, and facilitated meaningful discussions and collection of 'Audience Insights' that will inform future research.
The event was organised by PhD student Rebecca Lane and Principal Investigator Prof. David Finn (Pharmacology and Therapeutics, School of Pharmacy and Medical Sciences; Centre for Pain Research; Galway Neuroscience Centre, University of Galway), in collaboration with PPI contributors and in partnership with Crohn’s & Colitis Ireland, Chronic Pain Ireland, and colleagues in the Gastroenterology Department at Galway University Hospital.
Have a look at their Breaking through the Pain Barrier event report and Audience Insight Infographic which they created post-event in collaboration with PPI contributors.
For more details on ongoing research and future PPI activities in this space, please contact Rebecca at R.Lane2@universityofgalway.ie

 Wednesday 29th October

Voice in Action: Social health supports for people living with young-onset dementia 

Aras Moyola, University of Galway

Two photos, One of Ziyue Wang presenting her research, one of the attendees of the event.

People living with dementia younger than 65 are considered to have young-onset dementia. Held during the National PPI Festival 2025, this event on young-onset dementia brought together people with lived experience, professionals, and researchers to connect in a welcoming, low-pressure environment. It was an awareness and networking event featuring research insights and personal stories of people living with young-onset dementia. The focus was on the social health of people living with young-onset dementia, including social health status, lived experiences, and potential strategies aimed at improving social health.

This event was organised by Ziyue Wang, a final-year PhD student based in the School of Nursing and Midwifery, University of Galway, supervised by Dr. Duygu Sezgin and Dr. Andrew Hunter.

For more details contact Ziyue Wang at: Z.Wang17@universityofgalway.ie   

Thursday, 6th November (postponed)

Empowering Inclusive Digital Futures: The Digi-ID Co-Design Project and DigiAcademy Experience 

Institute of Lifecourse And Society, University of Galway

Some of the attendees at the digiacademy event

DigiAcademy Technology was a spin-out start-up of Trinity College Dublin, founded and led by Dr. Esther Murphy. This innovative digital skills education programme was developed through a co-creation process with adults with intellectual disabilities and was delivered via an accessible solution/app. The workshop explored the importance of inclusive research practices, employment skills development, and accessible digital skills training. Through a presentation by a learner with an intellectual disability who trained as a teacher, a demo of the platform, and interactive discussions, participants gained valuable insights into creating more inclusive and equitable digital futures.

The event will be hosted by Cumas students and team, the University of Galway’s programme for adults with an intellectual disability. 

If you would like to find out more about this event, please email jacqueline.murphy@universityofgalway.ie 

 

Other Events in Galway

Alongside these, the University of Galway community hosted five additional events,

Tuesday, 7th October

Screening of the Patient Effect – 6 Years On 

Hybrid - Aras Na Mac Leinn, University of Galway

The trailer photo of 'The Patient Effect'

The Patient Effect was selected as the Science on Screen commission for 2019 and was co-funded and developed through a Health Research Board Knowledge Exchange and Dissemination Scheme grant awarded to the HRB Primary Care CTNI. The documentary told the story of Public and Patient Involvement in Research — how tapping into the lived experiences of patients, their families, and carers had the potential to greatly enhance the quality and relevance of health and medical research.

Directed by Mia Mullarkey and produced by Alice McDowell, both of Iskha Films, this Irish documentary followed three personal stories that reflected the power of including public and patient voices in planning and conducting research. Paul Ryan, father to Sophia who was born premature at 25 weeks, contributed to a major research programme called NEPTuNE — exploring the most effective methods to monitor and manage babies with neonatal brain injury. Cameron Keighron, who lives with type 1 diabetes, was heavily involved in developing a new way of delivering healthcare to young people with diabetes. Connecting with Margaret Devaney and the Swinford Arthritis Walking Group provided first-hand insight into the impact of chronic pain on day-to-day life for medical device developers at the University of Galway, inspiring their research endeavours.

Several years on from the making of this documentary, much had changed in the world of PPI in Ireland, but the documentary remained relevant and inspirational in the work it presented. In keeping with the Festival theme that year, “Celebrating our History, Embracing our Future,” the HRB Primary Care CTNI, with support from PPI Ignite and PPI Ignite @ University of Galway, screened the documentary, followed by a short reflection that revisited some of the themes in the film and the progress seen since it was created.

If you want to find out more about the event, email laura.l.oconnor@universityofgalway.ie 

Or watch The Patient Effect video

Wednesday, 8th October

ENLIGHT Teaching & Learning Conference 2025 Presentation: Collaborative Learning through co-designed PPI PhD module

Uppsala University, Sweden

Dr. Ruth McMenamin teaching PPI in Sweden

Uppsala University hosted the fifth ENLIGHT Teaching & Learning Conference on the theme Playfulness for the Future of Higher Education. Over two and a half days, attendees shared experiences of various playful teaching methodologies, promoting spontaneity and open-ended conversations.

The PPI Ignite Network @ University of Galway delivered an oral presentation titled “Collaborative Learning through Co-Designed PPI PhD Module.” The co-presented discussion, led by PhD student Yvonne Fitzmaurice and educators Dr. Ruth McMenamin and Martha Killilea, explored creative learning opportunities, peer reflections, evaluation techniques, and opportunities for playful new learning in the area of PPI in scholarship.

If you would like to find out more about this event, please email martha.killilea@universityofgalway.ie 

Monday, 13th October

PPI Facilitation Skills Shared Learning Group

Zoom

PPI Facilitation Skills Shared Learning Group Advert

During the National PPI Festival 2025, The PPI Ignite Network @ University of Galway co-ordinated on online PPI facilitations Skills Shared Learning Group. The meeting was an opportunity for attendees to learn from each other as they shared their own experiences of attending and/or facilitating PPI meetings. During this meeting we focused on looking forward. Attendees imagined they had a magic wand. We considered with one wave of the want, what would we do to strengthen, support, and transform how we all facilitate PPI.

Tuesday, 14th October

Webinar on the James Lind Alliance Priority Setting Partnership

Zoom

Advert for Webinar on the James Lind Priority Setting Partnership in Diabetes

 

The study was carried out through a collaboration involving people living with diabetes, their families, diabetes charities, and healthcare professionals across Ireland and the United Kingdom. It employed the James Lind Alliance (JLA) Priority Setting Partnership (PSP) approach, a method designed to unite patients, caregivers, and clinicians in identifying and ranking the most important unanswered questions in healthcare. By using this approach, the study ensured that the perspectives and experiences of those living with Type 1 diabetes were placed at the heart of determining the key research priorities and care needs.

The final top 10 priorities reflect both ongoing concerns and emerging issues in the field of diabetes management, and can be found online. 

To find out more about this research, contact sharon.conway@universityofgalway.ie 

Saturday, 18th October

In4Kids/CHI National Young Persons Advisory Group autmmn inperson meeting

Ideas Lab, University of Galway

A photo of In4Kids, Children's Health Ireland, and PPI Ignite Network @ University of Galway representatives

The PPI Ignite Network @ University of Galway and the Ideas Lab welcomed the National YPAG in October. The CHI and In4Kids established the National YPAG in 2025. The group met in University of Galway for an in person PPI meeting.

If you would like to find out more about this event, please email sharon.rafferty@childrenshealthireland.ie