1. Palliative Medicine Research The National Agenda and Lancaster Initiatives Mike Bennett Professor of Palliative Medicine Lancaster University

2. Outline A short history lesson Current activity Future directions

3. Before 1987… Single centre studies Largely observational Charismatic champions of research Cicely Saunders original vision – clearly stated research is integral to hospice care

4. Early examples – John Hinton

5. Robert Twycross The first RCT in palliative care? Br J Pharmacol. 1972 November; 46(3): 554P–555P.

6. 1987 - 2000 Palliative Care Research Society – Formed as PCRF in 1995 – dedicated to promoting research into all aspects of palliative care and to facilitating its dissemination. EAPC research forum – First meeting in Berlin 2000 – HQ in Trondheim, Norway (Prof Stein Kaasa)

7. 1987 - 2000 In 1988 – Zero academic chairs in palliative medicine In 1998 – 5 substantive academic chairs in palliative medicine (not honorary) London (2) - Kings, St Thomas’ Bristol, Cardiff, and Sheffield

8. 1987 - 2000 Steady output of descriptive research Few RCTs, all around service delivery Palliat Med. 1995 Jan;9(1):27-35. Links Regional Study of Care for the Dying: methods and sample characteristics. Addington-Hall JAddington-Hall J, McCarthy M.McCarthy M British Journal of Cancer (2002) 87, 733-739. The imPaCT study: a randomised controlled trial to evaluate a hospital palliative care team G W Hanks et al

9. 2000 - 2008 Strategic initiatives 2001 – NCRI formed and established Strategic Planning Group for palliative care research (2002) 2003 – Palliative Care clinical studies group formed within NCRN

10. 2000 - 2008 2006 – Additional funding for 2 ‘SuPaC’ research collaboratives (£1.9m each over 5 years)

11. 2000 - 2008 COMPASS: – COMPlex Interventions: Assessment, TrialS and Implementation of Services www.compasscollaborative.com CECo – Cancer Experiences Collaborative www.ceco.org.uk

12. 2000 - 2008 Research priorities Yorkshire scoping exercise – Symptoms – Service delivery – Poor capacity but better in hospices Other surveys – ‘Coal face workers’ symptom management dominates – ‘Ivory tower academics’ Methodological issues e.g. outcomes assessment, design

13. Current activity In 2008 – 10 academic chairs – New posts Liverpool (2), Edinburgh (2), Lancaster

14. Current activity NCRN Palliative Care group – 4 subgroups Pain (Prof Fallon) Prognostication (Dr Stone) Breathlessness (Dr Booth) Cachexia (Dr Wilcock)

15. Future challenges Intervention studies – testing hypotheses – answering important clinical questions about therapies Multicentre studies – conducting research effectively – answering questions with greater power – harnessing potential of hospices

16. Future challenges Primary palliative care – Service delivery Including symptom control at home – Integration of ‘community’ services Primary care Hospice services Community specialist nurses

17. Future challenges End of life care strategy – Prognostication – Service delivery for patients at home or ‘in the community’

18. Lancaster initiatives International Observatory on End of Life Care

19. Lancaster initiatives

20. Current themes and activities 1. Cancer pain – 1.1. Older people’s experiences – 1.2. Educational interventions – 1.3. TENS clinical trial – 1.4. QST to determine analgesic therapy 2. End of Life Care – 2.1. Screening for psychological distress – 2.2. Impact of information on rehydration decisions

21. The vision Create network of research active hospices in North Lancashire and Cumbria Undertake UKCRN portfolio research studies – locally developed – contribute to multicentre recruitment Building capacity – involving clinical staff in research – integrating research activity and findings into routine palliative care services

22. Network of research active hospices Core funding from Cumbria and Lancashire CLRN to support 3 hospices – £55k per year for 3 years – Lancaster, Blackpool, Preston – Consultant sessions – Full time health research practitioner Will co-ordinate governance and management of studies Attract additional research support staff

23. Lancaster initiatives

24. Network studies CR-UK TENS – Feasibility study nearing completion – RCT starting early 2009

25. Network studies DVD trial – Brief educational intervention for cancer pain – Feasibility study underway – RCT planned early 2009

26. Links with industry Increased capacity for pharma trials – Nasal fentanyl for breakthrough pain – Methylnaltrexone for opioid induced constipation Contributing to other multicentre UKCRN trials Fatigue – Using exercise as an outcome measure Breathlessness – RCT of fan for breathlessness Pain – S-ketamine in cancer neuropathic pain Network studies

27. Thank you m.i.bennett@lancaster.ac.uk