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All Ireland Research Active Hospice and Specialist Palliative Care Provider Event

Introduction

The All Ireland Research Active Hospice and Specialist Palliative Care Provider event was held in the Ashling Hotel on the 12 June 2024. The aim of this in-person event was to improve care for people with palliative care needs by bringing together hospices and specialist palliative care providers, CEOs, and research leads, who are research active or interested in developing researcher capability with researchers, policymakers, funders, charities, and PPI contributors. The focus was on sharing the results of an All Ireland Research Hospice and Specialist Palliative Care Provider Survey to encourage discussion of the opportunities, challenges and way forward for further developing research in adult and children’s hospices and specialist palliative care services on the island of Ireland in line with policies and priorities. The event was supported by the Health Research Board, Health and Social Care R&D Division, Public Health Agency and Health Service Executive (HSE) and was approved for CPD by Royal College of Physicians Ireland.

Audience

45 participants from over 30 different organisations from the island of Ireland and internationally including representatives from Hospices and Specialist Care Providers, members of the Palliative Care Research Network (PCRN) and Early Career Researcher Forum (ECRF), health and social care professionals, policymakers, charity representatives, funders, and Voices4Care members.

Programme

The programme for the event is available here.

Slides and Videos

Opening

Karen Charnley, CEO AIIHPC opened the event, view Karen’s opening remarks video here.

All Ireland Hospice and Specialist Palliative Care Provider Research Activity

Dr Mary Rabbitte, Research Programme Manager, AIIHPC, provided an update on research activity and presented the results of a survey on research activity across hospice and specialist palliative care providers on the island of Ireland from May 2024. View Mary’s slides here and video here.

Leading Hospice Research Learnings from UK

Invited speaker Prof Christina Faull, Consultant in Palliative Medicine LOROS hospice, Professor Palliative Medicine University of Leicester, UK spoke about what the landscape of research is in the UK and gave insight into how to progress the Palliative Care research agenda. View Christina’s slides here and video here.

Leading and Delivering Research on island of Ireland

Prof Karen Ryan, Consultant in Palliative Medicine St Francis Hospice, Mater Misericordiae University Hospital, Professor School of Medicine, University College Dublin spoke about how palliative care research is being progressed and what needs to happen for it to be continued. View Karen’s slide here and video here.

Kasia Patynowska, Research Nurse, Marie Curie Northern Ireland provided the audience with insight into the role of a Research Nurse within palliative care research. View Kasia’s slides here and video here.

Engaging Public and Patient Involvement Contributors

This panel session was chaired by Voices4Care member Will Higgins. He was joined in discussion by Dr Mary Nevin, Assistant Professor Nursing, Dublin City University and Dr Janet Diffin, Programme Manager, HSC R&D, Public Health Agency. Together they discussed the ongoing development of the role of PPI in palliative care research, and what the future holds for it. View their panel discussion video here.

Making Research Governance Easier

Dr Una Molloy, Advanced Nurse Practitioner, St Francis Hospice, chaired this session and spoke about her experience of the ethical approval process and how to make the process more accessible. View Una’s slides here and video here.

Gurmel Bhachu, Senior Research Governance Manager, Marie Curie UK spoke about how to make research governance easier for hospices using his experience within Marie Curie. View Gurmel’s slides here.

Dr Mary Clare O’Hara, National Programme Manager, HSE spoke about how the current ethical approval system is structured within the HSE and future plans for improvement. View Mary Clare’s slides here and video here.

Barriers, Opportunities and Resources for Hospice Engagement in Research

Invited speaker Prof Catherine Walshe, Professor of Palliative Care, Lancaster University, UK spoke about her research on the barriers and opportunities for palliative care research in hospices. She also presented the resources that are available to support researchers doing research in hospice and specialist palliative care provider sites. View Catherine’s slides here and video here. See link to resources here.

Open Session

Dr Jackie Boylan, External Facilitator, facilitated the open session that included round table discussions on barriers and enablers to developing palliative care research.

Closing Comments

Karen Charnley, CEO of AIIHPC provided the closing comments see Karen’s video here.

Acknowledgements

We would like to thank all our speakers on the day, those that took part in the panel discussions and everyone who participated in the open session. We would also like to thank the organising committee for the event, and facilitators that included Dr Jackie Boylan, Dr Sheena Geoghegan and Prof Kevin Brazil as well as AIIHPC colleagues. Thank you to our funders for their support, the HRB, HSC R&D, PHA and HSE.  

If you have any queries or comments about the event, please contact Dr Mary Rabbitte at mrabbitte@aiihpc.org.

Please note: Information from the day and open session will be used to develop a position paper on this topic and will be available in Q4 2024.