National PPI Festival 2024

National PPI Festival 2024: Connect, Collaborate, Celebrate

The National PPI Festival 2024 was held this year from the 1st - 31st of October. Entitled, "Connect, Collaborate, Celebrate", the third year of the Festival aimed to celebrate PPI progress to date, provide opportunity to foster existing relationships, broaden connections with the research community not currently involved in the network, increase awareness of PPI, and allow a creative space for innovation. 

The PPI Ignite Network @ University of Galway collaborated with PPI Contributors, patient & community organisations, and university researchers to bring a host of events highlighting our University's strong commitment to PPI and the network of excellence we have created to achieve further innovation and progress to involvement in health and social care research. Read below some highlights from this year's festival, and outputs we've created. 

Friday, 4th October

Developing Consensus on an Irish Renal Registry for Research: A Multi Stakeholder Event

Aisling Hotel, Dublin

Chronic kidney disease (CKD) is common in Ireland - with a recent study showing 1 in 7 people over 50 years old have the condition - and is associated with significant social and economic burden. Despite this, Ireland has no patient registry for kidney disease. A registry is simply a computer database that collects clinical information and health outcomes for a group of patients to help improve the quality of care.

This conference brought together the HSE National Renal Office, the Irish Nephrology Society, Irish Universities, the Irish Kidney Association, kidney patients, eHealth Ireland and the HSE National Health Intelligence Unit to develop a shared vision of the key considerations in the development of the Irish Renal Registry to enable research. 

For more details contact David Keane at: keanedd@universityofgalway.ie

Tuesday, 8th October

Top Research Priorities for Managing Chronic Conditions in Primary Care - an interactive workshop

The HRB Primary Care Clinical Trials Network hosted an online workshop with Health Research Charities Ireland on the top 10 unanswered research questions about managing chronic conditions in primary care identified by the outcomes of a James Lind Alliance Priority Setting Partnership. The workshop aimed to find out how to support research that has the potential to really benefit those most affected. Together, researchers and PPI contributors learned about how the top ten list was developed and came together to discussed how the Top 10 Priorities aligned with their own interests and organisational strategies and how they could be addressed in future research that delivers real change for the people most affected. 

If you would like to find out more about this event, please email laura.l.oconnor@universityofgalway.ie

Friday, 11th October

Exploring Sex and Gender Disparities in Chronic Pain

Hybrid - Human Biology Building, University of Galway

This event, hosted by researchers at the University of Galway School of Pyschology and Chronic Pain Ireland with the support of the PPI Ignite Network @ University of Galway, explore the critical issue of sex and gender in chronic pain, inviting all genders to join the conversation. While chronic pain may affect individuals differently, this event outlined what we now know about sex and gender as variables in chronic pain, what impact the outcomes of the PAINDIFF network will have on the study of sex and gender in pain and how this may inform on diagnosis and treatment outcomes for everyone. 

At the event, Ms. Martina Phelan, Chairperson of Chronic Pain Ireland, emphasised the importance of the patient voice in shaping healthcare, stating "Lived experiences must be at the heart of research. By including patients in the conversation, we ensure that the solutions developed genuinely address the realities of chronic pain."

To watch a full recording of the event go to: https://chronicpain.ie/media-library/

Monday 14th October

PPI Facilitation Skills Shared Learning Group

Zoom

During the National PPI Festival 2024, 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. Our Shared Learning Group is hosted on the second Monday of every month. The group is open to anyone who is interested in PPI facilitation and no prior experience is required.  The sessions are an opportunity for each of us to share experiences and learn from each other.

To register to be informed about upcoming Shared Learning Groups, go to click here. 

 Wednesday 16th October

Fostering Community/Academia Partnerships in the US and Ireland - Lessons learned through the Community Engaged Scholars Programme 

Zoom

During this lunchtime seminar attendees heard stories from the Medical University of South Carolina's Clinical & Translational Research Institute and the University of Galway on their collaboration and roll out of the Community Engaged Scholars Programme (CESP) in the US and Ireland. The similarities and differences between such initiatives in the US and Ireland were highlighted, and attendees learned more about the key factors and challenges which arise in creating meaningful partnerships between communities and academics. 

Learn more about the Community Engaged Scholars Programme (CES-P) in University of Galway here.

Friday 18th October

Empowering Youth Voices

Zoom

This online seminar was hosted by PPI Ignite Network @ University of Galway and the D1 Now Definitive trial to showcase international examples of PPI excellence in the realm of health research for young people and young adults. With researchers and PPI contributors invited to speak from The University of Birmingham and Leiden University Medical Centre, the event demonstrated the impact of youth participation in research, sharing insights from young people's experiences of participation and exploring the challenges faced by researchers in managing long-term youth advisory boards.

Tuesday 22nd October,

How do we demonstrate the impact of PPI? A discussion and launch of a PPI training evaluation resource

During this seminar the PPI Ignite Network work package one working group provided attendees an opportunity to hear about the evaluation and impact of PPI training activities. Why it is important to evaluate PPI training was discussed along with the types of evaluation which can be engaged with including some of the available tools and resources for evaluating PPI training. This session also explored the many challenges that still exist in demonstrating the impact of PPI training.

The event was also the official launch of a PPI training evaluation resource co-created by members of the PPI Ignite Network Work Package 1 with the ultimate goal of improving PPI training provision across Ireland. This resource is open and free to use and adapt for a range of people interested in demonstrating the impact of their PPI training activities. 

The PPI training evaluation resource can be found here. 

Tuesday 29th October

How to Engage Diverse Communities in Health Research: A Patient's Perspective

 University of Galway

This patient-led in-person workshop was hosted by PPI contributor and patient advocate Charlene Young with the support of Evidence Synthesis Ireland and the PPI Ignite Network @ University of Galway. The practical and interactive workshop highlighted the critical importance of involving, engaging, and empowering diverse communities to be involved in health research and was open to healthcare professionals, researchers, students, PPI contributors, and community members/leaders.

Charlene Young is a nominated and award-winning patient advocate. She became involved in health research due to her lived experience as a cancer patient. Over the years her experience in PPI groups has led her to identify a lack of diversity in these groups, particularly those of ethnic minority backgrounds. She discovered and utilised tools to educate others and encourage all communities to take part in health research.

Read Charlene's summary of the workshop here: Charlene Young Workshop Summary