Making patient and public involvement in cancer and palliative care research a reality : academic support is vital for success

COLLINS, Karen, BOOTE, Jonathan, ARDRON, David, GATH, Jacqui, GREEN, Tracy and AHMEDZAI, Sam (2015). Making patient and public involvement in cancer and palliative care research a reality : academic support is vital for success. British Medical Journal (BMJ) (Supportive and Palliative Care), 5 (2), 203-206.

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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.

Item Type: Article
Additional Information: Published Online First 24 September 2014
Research Institute, Centre or Group: Centre for Health and Social Care Research
Identification Number: 10.1136/bmjspcare-2014-000750
Depositing User: Karen Collins
Date Deposited: 14 Oct 2014 09:07
Last Modified: 19 Oct 2016 14:54

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