1. NI Palliative Care Research Forum Setting the Scene: The milestones Dr S McIlfatrick University of Ulster/NHSCT

2. The Journey so far!

3. Building Collaboration for Palliative & End of Life Care Research Workshop: NICaN Supportive & Palliative Care Network & (HSC) R&D office Purpose: To explore the possibility of establishing a research network for palliative and end of life care research 2008

4. Summary Points of rationale for regional research group Support new researchers Awareness of policy & practice Communicating research activity Link local, regional and all-Ireland Opportunity to work together Cancer & non-cancer agenda Opportunities to secure funding Lobby and influence for palliative care Opportunities multi- centre studies and links

5. Significant Next Steps Establish small leadership team from amongst interested parties Establish clarity with regards to purpose and have clear vision & direction Portfolio of research, identifying groups & funding streams 2008

6. Leadership Group met Developed Aim & Objectives; Structure & Proposed Activities Business case drafted to submit to HSC R&D Division, Public Health Agency for funding to support establishment of Regional Palliative Care Research Forum 2009

7. Establishing Forum Money awarded for 3 years (2010-2013) Project Plan developed and presented to Implementation Board for Palliative Care Strategy (DHSSPS, 2010) Executive Committee established and are a Sub- Group of Implementation Board 2010

8. Executive Committee Chair: Dr S McIlfatrick: UU/NHSCT Co-Secretary: L Rutherford: MC/QUB/BHSCT A Roulston: QUB Finance: Dr G Johnston: HSC R&D IT & PR: C Payne: NI Hospice/Ulster Prof G Kernohan: Ulster PPI Member

9. Aim of Palliative Care Research Forum: NI (PCRF-NI) To encourage collaborative research initiatives and to work together in partnership to make substantive progress in research capacity & the quality of palliative care research in Northern Ireland

10. Objectives To develop an enabling infrastructure to support interdisciplinary palliative care research initiatives & ideas To develop expertise in the application of research approaches and methods for palliative care research To embed personal and public involvement in partnership working for palliative care research To develop high quality regional, national and international interdisciplinary research proposals To enable Northern Ireland to participate appropriately in the work of the AIIHPC.

11. Membership HSC Trusts Universities Marie Curie NI Hospice Primary care Pharmacy Allied Health Professionals Social Care Nursing Medicine Psychology Spiritual support Nursing Homes Minority Groups Genuine interest in the development of Palliative Care Research in Northern Ireland. Representation from a range of organisations & constituencies

12. Possible Activities Proposed to have 3 Events per year Possible themes for activities Methodological Considerations Research Capacity Building & Networking Opportunities Personal & Public Involvement Activities

13. Planning ahead Opportunities Aligned to current priorities Potential of meeting multiple agendas Owned by members Developing palliative care practice 2011

14. Group Discussion

15. Identified Palliative Care Research Interests 1. Needs of Carers and User Involvement 2. Psychosocial Interventions & Bereavement 3. Strategic Planning: Community Care & Policy 4. Achieving a good death 5. Quality of Life & Symptom Management 2011

16. 16 Working Towards the Continuous Improvement in the Quality of Cancer Care and Cancer Survival Three things to think about What would a successful research forum look like for you? What is the purpose of the forum? What do you want out of it? What are the research priorities for palliative care for next 5 years?

17. Next Steps Web site: Date for Diary:Tues 5 th July 2011 MASTERCLASS: Psychosocial Interventions Speaker: Professor Peter Hudson, Director, Centre for Palliative Care, St.Vincent’s Hospital & Collaborative Centre, University of Melbourne & Professor of Palliative Care, QUB.