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IntroductionThere can be a mismatch between what the public see as important unanswered questions and those which are actually researched. The Palliative and end of life care Priority Setting Partnership, facilitated by the James Lind Alliance (JLA), identified and prioritised questions about palliative and end of life care that people in the last years of life, current/bereaved carers and professionals feel are important for research to address.Aim(s) and method(s)A UK public survey (December 2013–April 2014) identified questions about support, care and treatment of people in the last years of life. Some 83 questions were formulated and prioritised via a second public survey. The resulting top 28 were prioritised in a workshop comprising patients, carers and clinicians to determine the top 10 research questions.Results1403 surveys were returned. Most respondents identified as bereaved family/friends and health or social care professionals. Respondents submitted a range of questions on services, communication, symptoms and perceptions of palliative care. 1331 respondents completed the second survey. In November 2014, 24 people participated in a workshop to prioritise the ‘top 10’ questions (using the Nominal Group Technique) which will be reported in January 2015.Responses that are ‘out of scope’ of the JLA protocol will be analysed and reported separately.Conclusion(s)The ‘top 10’ uncertainties will guide project partners' and other organisations' funding strategies, ensuring that future research is relevant to palliative care populations. We will discuss how the results of this project will guide the palliative and end of life care research agenda in future.
BackgroundPalliative 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.AimsThe 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.MethodsThe 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.ResultsThe 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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