Advance Therapies

How do I involve patients or the public in research?

Patients and public can be involved in the research process in several different ways:

  • consultation – for instance by asking people to comment on a research proposal
  • collaboration – for instance by inviting people to sit on a steering group
  • patient-led research – for instance where patients are co-applicants.

The Research Design Service London suggests that the different stages of the research process where PPI can be incorporated are:

  • identifying research priorities
  • design of a research project
  • development of the grant proposal
  • undertaking research, for instance by conducting interviews
  • analysing and interpreting data
  • dissemination of findings
  • implementation of findings
  • monitoring and evaluation of the research.

Researchers who make the involvement of users and the public an inherent part of their research also gain a huge source of practical help and solutions.

Patients and the public can:

  • look at research from a practical point of view and make positive recommendations, suggesting for instance more meaningful and reliable outcome measures, effective timing, improved recruitment procedures
  • help improve the language and accessibility of patient information and invitation letters
  • carry out recruitment or interviewing
  • provide access to different communities
  • act as advocates and disseminators of research findings.