Setting Research Priorities in Partnership with Patients to Provide Patient-centred Urological Cancer Care.
Brown, Janet E
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Rossi, S., Fielding, A., Blick, C., Handforth, C., Brown, J. E., & Stewart, G. (2019). Setting Research Priorities in Partnership with Patients to Provide Patient-centred Urological Cancer Care.. European urology, 75 (6), 891-893. https://doi.org/10.1016/j.eururo.2019.03.008
There is a growing body of work advocating that research funding should be matched to the societal burden of a disease, which goes beyond simple mortality measures. Renal cell carcinoma (RCC) is a good example of this problem. RCC contributes to a greater average number of years of life lost (a measure of cancer burden dependent on patient age at death and the number of deaths at each age) than other urological, colorectal and haematological cancers (1). Despite its increasing prevalence, RCC receives a disproportionately small fraction of the cancer research budget across the UK, USA and Australia (1,2). It follows that research priorities should be identified using transparent and rigorous methodology, to maximise output, avoid research waste and enable international collaboration (3). Furthermore, there is a well-documented discrepancy between the prioritisation of the research agenda by patients and researchers (4). As such, patient and carer participation in priority setting is crucial. The James Lind Alliance (JLA) was developed to facilitate researcher, carer and patient collaboration within Priority Setting Partnerships using standardised methods (5). A number of national and international organisations, including the UK National Cancer Research Institute (NCRI) and the National Institute for Health Research (NIHR), have emphasised consumer participation in priority setting as key goals within their strategic agenda and they collaborate with the JLA to achieve this (6,7). This has sparked international efforts to establish robust research priorities in a number of cancer types. A highly successful initiative identified research gaps in breast cancer in 2008 and was updated in 2013 (8). This work has led to tangible research advances, and the source manuscript has been cited nearly 150 times (8). This has been followed by research gap analyses in other disease areas. including colorectal cancer.
Humans, Urologic Neoplasms, Research Personnel, Patient Participation, Patient-Centered Care
External DOI: https://doi.org/10.1016/j.eururo.2019.03.008
This record's URL: https://www.repository.cam.ac.uk/handle/1810/290290
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Licence URL: https://creativecommons.org/licenses/by-nc-nd/4.0/