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  1. Sabine Best1,
  2. Teresa Tate1,
  3. Bill Noble1,
  4. Joanna Eley2,
  5. Joanna Black3,
  6. Mike Stockton4,
  7. Amanda Cheesley5,
  8. Lauren Berry5,
  9. Rosie Loftus,
  10. Andrea Dechamps6,7,
  11. Elaine Stevens8,
  12. Alison Penny9,
  13. Linda McEnhill10,
  14. Alan McNair11,
  15. Belinda Cupid12,
  16. Sarah Fryett13,
  17. Angharad Kerr14,
  18. Sonja McIlfatrick15,
  19. Annmarie Nelson16,
  20. Bridget Candy17 and
  21. Katherine Cowan18
  1. 1 Marie Curie Cancer Care, London, UK
  2. 2 NCRI Consumer Hub
  3. 3 National Council for Palliative Care
  4. 4 Association for Palliative Medicine of Great Britain and Ireland
  5. 5 Royal College of Nursing
  6. 6 Macmillan Cancer Support
  7. 7 St Christopher's Hospice
  8. 8 Scottish Partnership for Palliative Care
  9. 9 National Bereavement Alliance and Childhood Bereavement Network
  10. 10 Help the Hospices
  11. 11 Chief Scientist Office
  12. 12 Motor Neurone Disease Association
  13. 13 National Institute for Health Research
  14. 14 National Institute for Social Care and Health Research
  15. 15 All Ireland Institute of Hospice and Palliative Care
  16. 16 Marie Curie Palliative Care Research Centre, Cardiff University
  17. 17 Marie Curie Palliative Care Research Unit, University College London
  18. 18 James Lind Alliance


    Background Palliative and end of life care research is an underdeveloped research area [National end of life care strategy, 2008; Rapid Review NCRI, 2010].

    The importance of involving patients and clinicians in the setting of research questions to avoid funding research that is of low relevance to the end users of the research findings has been highlighted [Chalmers and Glasziou, 2009].

    Initiated by Marie Curie Cancer Care, a large number of organisations have come together to form the ‘Palliative and end of life care Priority Setting Partnership’ (PeolcPSP) with the James Lind Alliance. The PeolcPSP is co-funded by Marie Curie Cancer Care, Chief Scientist Office, NIHR, MND Association, NISCHR, Macmillan Cancer Support, CR-UK, HSCNI, MRC and ESRC.

    Aims The aim of the PeolcPSP is to identify unanswered questions about palliative and end of life care and then prioritise those that people who are likely to be in the last years of life, current and bereaved carers and professionals working with people at the end of life agree are the most important.

    Methods The process commences with a survey. People are asked to submit questions or ‘evidence uncertainties’ about care, support and treatment for people with life-limiting conditions who may be in the last years of life and about support for current or bereaved carers.

    Survey responses are categorised by an information scientist who also checks whether any of the submitted evidence uncertainties have already been addressed by existing evidence. Priority setting workshops with patients, carers and professionals are carried out to determine the ‘top ten’ evidence uncertainties in any category, using the Nominal Group Technique.

    Results The results of the PeolcPSP will inform partners' research strategies and will allow funding bodies to target limited funds to research priorities of the end user.

    We will report preliminary findings on the process and types of questions proposed.

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