Evidence Library

Title: Taking patient reported outcomes centre stage in cancer research – why has it taken so long?
Author: Selby P and Velikova G.
Date Published: 2018
Reference: Research Involvement and Engagement 4:25
Are service users or carers authors: No/Not Known

Abstract: Roger Wilson challenged cancer professionals in research and care to place the patient perspective and patient reported outcome measures centre stage. The ability to collect information from patients using structured questionnaires (known as Patient Reported Outcome Measures or PROMs) which ask about clinical issues (such as disease symptoms or treatment side-effects) as well as social, emotional and psychological issues has existed for 40 years. They provide a powerful way of working out whether an aspect of diagnosis or treatment for cancer is bringing real benefits to patients that can be measured using these structured questionnaires. When they are used, studies and cancer service developments are clearly constrained to focus on what matters to patients rather than, perhaps what matters to health service professionals or recent exciting but perhaps relatively unproven new technologies. There is good evidence that PROMs can contribute valuable inputs into the results of randomised controlled trials, clinical consultations and surveys of whole populations even at a national level. However, there is a great deal more work to be done on methodology and perhaps to change attitudes and cultures within the healthcare professions before they can deliver all of their potential to bring benefits to cancer patients.

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Categories: health
Designing research
impact on research
nature and extent of public involvement in research
impact of public involvement
reflecting on public involvement in research
journal article

Date Entered: 2019/01/08

Date Edited: 2019/01/08

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