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Making patient and public involvement in cancer and palliative research a reality: academic support is vital for success
  1. Karen Collins1,
  2. Jonathan Boote2,
  3. David Ardron3,
  4. Jacqui Gath3,
  5. Tracy Green3 and
  6. Sam H Ahmedzai3
  7. on behalf of the NTCRN CRP
  1. 1Faculty of Health and Wellbeing, Centre for Health and Social Care Research, Sheffield Hallam University, Sheffield, UK
  2. 2Centre for Research into Primary and Community Care, University of Hertfordshire, College Lane, Hatfield, Hertfordshire, UK
  3. 3Academic Unit of Supportive Care, University of Sheffield Medical School, Royal Hallamshire Hospital, Sheffield, UK
  1. Correspondence to Professor Karen Collins, Faculty of Health and Wellbeing, Centre for Health and Social Care Research, 32 Collegiate Crescent, Sheffield Hallam University, Sheffield S10 2BP, UK; k.collins{at}shu.ac.uk

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.

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  • Received 26 June 2014.
  • Revision received 28 August 2014.
  • Accepted 9 September 2014.
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