Information for patients

The National Institute for Health Research (NIHR) defines public involvement in research as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.

As a patient-centric organisation, RCSI fully appreciates that people with lived experience of healthcare conditions, family members and public stakeholders have unique perspectives that can improve the quality of the research, right from research design through to dissemination of results and translation into healthcare practise.

Meaningful and impactful patient and public involvement (PPI) in all research projects includes:

• Patients and potential patients
• Carers and people who use health and social care services
• People from organisations that represent people who use services.

Therefore, when the public gets involved in research, they work alongside researchers to help shape:

• What research gets done
• How it is carried out
• How the results are shared and applied in practice.

Mary's story

Below is a link to a recording of a patient's experience when diagnosed with brain tumour.