Patient and Public Involvement - Study Management - Management - Development

What is it? Why is it important?

Patient and Public Involvement (PPI) refers to research carried out with or by patients and members of the public rather than to, about, or for them.

During the study development phase, researchers can define how patients will be involved throughout the study, for example through a Patient Advisory Board (PAB), patient representatives on steering committees, or other mechanisms for ongoing consultation and collaboration.

A PAB is a group of patients (also caregivers) who advice healthcare establishments, researchers, or other patient relevant companies on how to improve services, treatments, and patient experiences.

PPI involvement may improve:

Acceptance and compliance with study-required procedures. This is because the organisational structure of the study has been evaluated and deemed feasible with respect to the study population under investigation
Study efficiency by preventing unexpected study management problems or hurdles (e.g. organisational delays or protocol amendments).

What do I need to do?

As a SP-INV:

Plan for clear and feasible study procedures
Define the roles, responsibilities, and level of PPI (e.g. prepare a clear role description)
Establish a PAB where relevant (e.g. 2–5 patient partners)
Define appropriate PPI compensation and reimbursement arrangements (e.g. meeting fees, travel expenses)
Ensure PPI involvement is meaningful, consistent, and not tokenistic, recognising the value of patient contributions.