Patient involvement in research

Patient and caregiver involvement in research can help to improve the relevance, quality, and value of research. Patients/caregivers are involved as active partners in research, and contribute their experiences and perspectives across the stages of the research process – setting the research priorities, designing, conducting, reporting, and disseminating research.

Key references and resources


Clarifying the role of patients in research – Liabo K et al BMJ 2018; 361:k1463
INVOLVE (UK) provides resources on how to involve patients and the public in research
NIHR (UK) National Standards for Public Involvement
Cochrane Consumers and Communication
Involving People in Research
Patient Involvement in Research: presentation slides created by Talia Gutman

Reporting guidelines

GRIPP2 reporting checklists: tools to improve reporting of patients and public involvement in research – Staniszewska S et al BMJ 2017;358:j3453


Impact of patient involvement on clinical practice guideline development: a parallel group study – Armstrong MJ et al Implementation Science 2018;13:55