Delphi Study on the creation of a Committee of patients, caregivers, and representatives of patient associations.

Abstract

Background: As part of the improvement plan of the Organisation of European Cancer Institutes at the Fondazione IRCCS Istituto Nazionale dei Tumori of Milan (INT) a Committee composed of patients, caregivers, and representatives of patient associations has been established to actively participate in the planning and organization of both hospital services and research initiatives. The potential impact of implementation of the Committee could ensure a patient-centered care environment.

Aim: To determine whether there is consensus among INT staff on key aspects of the Committee.

Method: Selected INT staff (experts) were invited to participate in a Delphi study. Each expert was asked to rate their agreement on 13 statements and give a brief explanation for their answers. Only the statements that failed to reach an 80% consensus were reintroduced in the second round, following the same procedures.

Results: Ninety experts responded to Round I (55.21% response rate). Eight statements reached the 80% consensus threshold, while five did not meet the predefined threshold and were therefore re-proposed in the second round. These statements concerned the Committee's role (advisory vs decision-making), the perceived value of the Committee in research (improvement vs no involvement), and participant compensation (voluntary vs paid). In Round II, 69 experts participated (79.31% response rate), but none of the reintroduced statements reached the required consensus threshold.

Conclusion: Although a Committee is a topic of theoretical interest and aligns with respondents' values, the establishment of a Committee in INT is currently difficult to implement. Training and awareness initiatives are necessary, as requested by respondents.