title: Making patient and public involvement in cancer and palliative research a reality: academic support is vital for success.
abstract: OBJECTIVE
  Patient and public involvement (PPI) has become an established theme within the UK health research policy and is recognised as an essential force in the drive to improve the quality of services and research. These developments have been particularly rapid in the cancer field.
  
  
  METHODS
  This paper outlines a model of PPI in research (known as the North Trent Cancer Research Network Consumer Research Panel, NTCRN CRP; comprising 38 cancer and palliative care patients/carers) and the key benefits and challenges to effective PPI in cancer research.
  
  
  RESULTS
  The PPI model has become a sustainable, inclusive and effective way of implementing PPI within the cancer context. Challenges include (1) a lack of time and funding available to support the PPI model; (2) tensions between different stakeholder groups when developing and conducting health research; (3) panel members finding it difficult to effectively integrate into research meetings when their role and contribution is not made clear at the outset or when unfamiliar language and jargon are used and not explained; (4) some professionals remain unclear about the role and practical implications of PPI in research. However, notwithstanding its financial and organisational challenges, the way that the NTCRN CRP is supported has provided a solid base for it to flourish.
  
  
  CONCLUSIONS
  PPI provides considerable opportunities for patients and the public to work collaboratively with professionals to influence the cancer research agenda, with the contribution of PPI to the research process being integral to the entire process from the outset, rather than appended to it.
authors.affiliation: Faculty of Health and Wellbeing, Centre for Health and Social Care Research, Sheffield Hallam University, Sheffield, UK.
authors.forename: Karen
authors.initials: K
authors.lastname: Collins
authors.affiliation: Centre for Research into Primary and Community Care, University of Hertfordshire, College Lane, Hatfield, Hertfordshire, UK.
authors.forename: Jonathan
authors.initials: J
authors.lastname: Boote
authors.affiliation: Academic Unit of Supportive Care, University of Sheffield Medical School, Royal Hallamshire Hospital, Sheffield, UK.
authors.forename: David
authors.initials: D
authors.lastname: Ardron
authors.affiliation: Academic Unit of Supportive Care, University of Sheffield Medical School, Royal Hallamshire Hospital, Sheffield, UK.
authors.forename: Jacqui
authors.initials: J
authors.lastname: Gath
authors.affiliation: Academic Unit of Supportive Care, University of Sheffield Medical School, Royal Hallamshire Hospital, Sheffield, UK.
authors.forename: Tracy
authors.initials: T
authors.lastname: Green
authors.affiliation: Academic Unit of Supportive Care, University of Sheffield Medical School, Royal Hallamshire Hospital, Sheffield, UK.
authors.forename: Sam H
authors.initials: SH
authors.lastname: Ahmedzai
mesh_terms: D002986:Clinical Trials as Topic; D006291:Health Policy; D006302:Health Services Research / Q000379:methods*; D006801:Humans; D009369:Neoplasms / Q000628:therapy*; D010166:Palliative Care / Q000379:methods*; D010358:Patient Participation; D012108:Research Personnel; D012109:Research Support as Topic
keywords: Cancer; Methodological research; Supportive care