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Patient and public involvement and engagement

ASPIRING has a Patient and public involvement and engagement (PPIE) Advisory Group (PAG) in the UK to oversee the global progress of the study and advise on UK issues.

The role of members of the PAG is to provide a PPIE voice to all aspects of ASPIRING. Specifically, by joining the ASPIRING PAG, members are agreeing to:

  • Ensure that the Trial Management Group (TMG) and Trial Steering Committee (TSC) are regularly updated with the ASPIRING PAG’s views about the study.
  • Help to ensure that information for potential participants is accessible and appropriate.

The responsibilities of members are:

  • To offer advice on:
    • methods of recruitment to ASPIRING
    • design, language, content of information leaflets, videos, and informed consent forms
    • methods of follow-up
    • design, content, and accessibility of progress reports and newsletters for participants
    • any other issues at the request of the TMG
  • To be available to support patients and carers with decisions about the study, if required after they have contacted the study office with questions.
  • If this occurs, the chief investigator’s team will the contact the ASPIRING PAG Chair, who will liaise with the PAG and seek a member to volunteer to contact the caller, having disguised their caller ID.
  • To monitor inclusion (especially older, female, and other under-served groups).
  • To interpret study results to help to identify themes that the researchers might have missed.  
  • To check the validity of conclusions from a PPIE perspective.
  • To highlight the findings that are most relevant to patients and the public. 

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