Patient, carer and public involvement and engagement in research (PCPIE) ensures that every aspect of the research process involves consultation or is carried out by patients, carers and the public.
Involvement refers to patients, carers and public working in partnership with researchers.
This may include commenting on the way a document for a research project, such as a patient information sheet, is written or laid out. It could also involve becoming a dedicated part of a patient and carer group, which acts as an advisory group throughout the project.
Involvement is different from taking part or being a participant in a research study. It is also different from engagement, when information about research is shared with the public or groups of people.
Many people begin getting involved by being a participant in a research project often advertised across healthcare centres, hospitals, clinics and through disease-specific support groups.
Why is PCPIE so important?
“When conducting a clinical research trial, it is so important to have a partnership between the team and members of the public.
“By working alongside the research team, they can actively contribute to the research process by advising how it should be carried out, leading to better understanding of the impact of our research.”
Tracy Marsden, Acute Research Delivery Team Lead
“I think it is important to encourage and empower researchers to have the patient voice and active involvement in their work from the moment it is being planned, right up to and including publication. It ensures that the research is relevant, timely and of importance to those for whom it is intended.
“I really believe it improves the relevance and quality of research for patient benefit. Being able to work with a researcher also improves my feelings of self-worth and being able to hold a useful place in society.”
Ann Bamford, patient representative
How to get involved
If you’re interested in getting involved, please complete our contact form and a member of our team will get back to you.