National PPI Festival 2024

National PPI Festival 2024: Connect, Collaborate, Celebrate

The National PPI Festival 2024 will be held this year from the 1st - 31st of October. Entitled, "Connect, Collaborate, Celebrate", the third year of the Festival aims 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 have worked together 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 a list of events happening near you, and be sure to register and share broadly with colleagues, partners, and PPI contributors. 

Friday, 4th October, 9:30-16:30pm

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

Aisling Hotel, 10-13 parkgate St, Stoneybatter, Dublin 8, Dublin

This conference brings 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. This will be captured in a report to the HSE to support ongoing work in this area and in a publication in HRB Open.

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.

Travel costs are available for members of the public and patients who would like to attend this event. 

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

Tuesday, 8th October, 14:00-16:00

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

Zoom

The HRB Primary Care Clinical Trials Network are hosting this free online workshop with Health Research Charities Ireland on the top 10 unanswered research questions about managing chronic conditions in primary care. The aim of the workshop is to find out how to support research that has the potential to really benefit the people most affected. This is a great opportunity to network with researchers and PPI contributors and share ideas and plans for impactful research, guided by the outcomes of a James Lind Alliance Priority Setting Partnership run by the HRB Primary Care Clinical Trials Network.

In this workshop, you’ll hear about the Top 10 list, how it was developed, and what happens next. You’ll also have the chance to feed back on how the list aligns with your own interests or your organisational strategy, and to discuss how individual items could be developed into research that will deliver real change for the people most affected.

If you would like to find out more about this event, please follow the registration link below, or email laura..l.oconnor@universityofgalway.ie

To Register: https://tinyurl.com/2f2uk7j7

Friday, 11th October, 14:00-16:00

Exploring Sex and Gender Disparities in Chronic Pain

Hybrid - Human Biology Building, University of Galway

This hybrid event will 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 will outline 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. We will also look at the reality of in-person clinical experiences, the importance of the patient voice in PPI Research and how to ensure this critical research is incorporated into health policy and services.

Register to attend in-person: https://www.surveymonkey.com/r/N7KWCRV

Register to attend online: https://tinyurl.com/4wbyfmj6

Monday 14th October, 12:30-13:30

PPI Facilitation Skills Shared Learning Group

Zoom

The PPI Ignite Network @ University of Galway will be hosting our monthly Facilitation Skills Shared Learning Group for the National PPI Festival. 

The shared learning group is open to anyone who is interested in facilitation of PPI meetings, no prior experience is required. The sessions are an opportunity for each of us to share experiences and learn from each other.

If you have any questions please email john.gaffey@universityofgalway.ie

Register here: https://tinyurl.com/mrxmhujm

 Wednesday 16th October, 13:00-14:00

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

Zoom

Participants of this lunchtime seminar will hear stories from the Medical University of South Carolina's Clinical & Translational Research Institute and University of Galway on their collaboration and roll out of the Community Engaged Scholars Programme (CESP) in the US and Ireland. Participants will learn about the commonalities and differences between such initiatives in the US and Ireland, and the key factors and challenges in meaningful community/academic partnerships.

Register here: https://tinyurl.com/4nu9zyuz

Friday 18th October, 14:30-16:00

Empowering Youth Voices

Zoom

Join PPI Ignite Network @ University of Galway and D1 now in this online seminar on Friday 18^th October, at 2:30-4:00pm  showcasing international examples of PPI excellence in the realm of health research for young people and young adults. The event aims to demonstrate 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.

Our goal is to inspire young people to get involved in research and to foster meaningful health research outcomes.

Speakers will include Aswathi Surendran, Programme Manager of D1Now and a member of the D1Now Young Adult Panel, Niyah Campbell, Public Involvement and Engagement Lead of the University of Birmingham Institute for Mental Health, and Assistant Prof Marleen Kunneman and Anka Van Gastel of the Leiden University Medical Centre. Presentations will be followed by a facilitated panel discussion and Q&A.

 This event is open to everyone, and we encourage young people interested in getting involved to join and hear about the difference they can make. 

Register here: https://tinyurl.com/dpvja4hd

Tuesday 22nd October, 13:00-14:00

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

Hybrid - G008 ILAS, University of Galway

This lunchtime seminar will provide participants with an opportunity to hear about the current state of play in evaluation and impact of PPI activities, both in Ireland and beyond. We will cover the basics of why it is important to evaluate our PPI work, the types of evaluation you can engage in and signpost some of the available tools and resources for evaluating PPI at present. This session will also explore and highlight the many challenges that still exist for academic researchers, PPI contributors, charity and community organisations and funders in demonstrating the impact of what they do. The seminar will also serve as the official launch of a PPI training evaluation resource cocreated by members of the PPI Ignite Network Work Package 1. This resource will be open and free to use and adapt for a range of people interested in PPI evaluation. Participants will hear about the many ways this resource can be utilised in their own work to better capture and demonstrate the impact of their training activities.

For more information, and if you wish to provide input or become involved in this session, please contact event coordinator Dr Brendan Dolan from PPI Ignite Network @ University of Galway: brendan.dolan@universityofgalway.ie

Register here: https://tinyurl.com/dpvja4hd

Tuesday 29th October, 10:00-13:00

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

Institute for Lifecourse and Society, University of Galway

This is a patient-led in-person workshop aimed at anyone interested in engaging with minority groups in health research. That includes healthcare professionals/clinicians, researchers, students, PPI contributors, and community members/leaders.

This 3-hour interactive workshop will highlight the critical importance of involving, engaging and empowering diverse communities to participate in health research. It will be delivered through practical and interactive activities to engage participants in active learning and discussions.

The Organiser 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.

Please register your interest in the link below. We will let you know whether you have a place in this workshop closer to the date.

I would like to thank the PPI Ignite Network at the University of  Galway and Evidence Synthesis Ireland for funding and supporting this workshop.

Register here: https://tinyurl.com/yfr9k7zm