NI Palliative Care Research Forum

Setting the Scene: The milestones

Dr S McIlfatrick

University of Ulster/NHSCT

The Journey so far!

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

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

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

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

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

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

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

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.

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

Possible Activities

Proposed to have 3 Events per year

Possible themes for activities Methodological Considerations Research Capacity Building & Networking

Opportunities Personal & Public Involvement Activities

Planning ahead

Opportunities Aligned to current

priorities Potential of

meeting multiple agendas

Owned by members

Developing palliative care practice

2011

Group Discussion

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

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?

Next Steps

Web site: Date for Diary: Tues 5th 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.