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Benefits of Public and Patient Involvement

Benefits of Public and Patient Involvement

Our collaboration with PPI representatives provides real and substantial benefits. Our PPI collaborators give us crucial insight into real-life experience of living with chronic and rare neurological conditions.  Together with our PPI representatives we have:

  • Designed our Phase 2 research programme with greater awareness of patient needs.
  • Influenced national policy on genomics in neurological healthcare and research.
  • Integrated valuable PPI insights into our communications initiatives.
  • Collaborated with PPI partners on funding applications.
  • Co-designed patient information leaflets and improved patient consent-seeking processes.
  • Created direct engagement opportunities for researchers, patients and their families to build ongoing relationships leading to research partnerships.
  • Raised awareness about brain health and celebrated our partnerships through music and art.