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11 – Getting the right research done is everybody’s business

In this Chapter:

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


In the preceding sections we have shown how much time, money, and effort can be wasted in doing bad or unnecessary research into the effects of treatments – research that does not, and never will, answer questions that matter to patients. We hope we have convinced you that better testing of treatments in the future should come from productive partnerships between patients, clinicians, the public, and researchers.

Next: How can patients and the public help to improve research?