A way to convert the diversity of individual experience into the closest representation of a typified patient perspective is to include more than one patient and more than one type of involvement.
Personal engagement
Patients participate actively in raising awareness from a personal perspective and provide feedback from direct experience.
Engagement occurs through patients sharing their stories and participating in focus groups, surveys, and targeted work groups.
Advisor
Patients provide opinion and guidance from the perspective of both individual and collective experience, making recommendations based on the best available evidence.
Views of a diverse range of patients are sought to provide advice and to influence the final decision.
Expert
Patients participate on organizational boards or are involved in advisory committees or major projects and are invited for their high-level expertise across a broad range of cancer care.
They are supported by a network of patients/peers who advise their work (e.g. patient associations, umbrella organizations). Patient experts have a longstanding experience in patient involvement in research.
Partner / Co-Researcher
Patients are considered as equal partners with essential knowledge necessary for research.
They are key to effectively support the implementation of PPI in research.