Working collaboratively bodes well for the future

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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.

Review of the Key points

  • Patients and researchers working together can help to identify and reduce treatment uncertainties
  • Input from patients can lead to better research
  • Patients sometimes inadvertently jeopardize fair tests of treatments
  • Relationships between patients’ organizations and the pharmaceutical industry can result in distorted information about treatment effects
  • To contribute effectively, patients need better general knowledge about research and readier access to impartial information
  • There is no one ‘right way’ of achieving collaborative participation in research
  • Patient participation should be appropriate for the specific research purpose
  • Methods of involving patients are continually evolving

MoreReferences (Section 11)

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