There are numerous ways in which patients and the public can become involved in testing treatments.
As we have already outlined, they may be the prime movers – the ones who identify the gaps in understanding and the need to find new ways of doing things.
Their input may be facilitated by researchers; they may be involved in some stages of the work but not others; they may be involved from the moment of identification of a specific uncertainty that needs addressing through to dissemination and implementation, and incorporation of the project’s findings in an updated systematic review; and they may be involved in different ways within one project.
Sometimes they initiate the work themselves.
There is no hard and fast rule: the appropriateness of different strategies and approaches in a particular study will dictate those strategies chosen. As the localized prostate cancer trial described above illustrates, methods are evolving all the time – even within the course of a project.
When patients and researchers work together they offer a powerful combination for reducing treatment uncertainties for the benefit of all. Various methods for enabling this joint working, suited to individual studies as appropriate, with endorsement and support from national research organizations, bode well for the future.
GET-IT provides plain language definitions of health research terms
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