Patient organisations' views, motivations and experiences on patient involvement in cancer research: a pilot study in Portugal.

ABSTRACT:

Objectives

To characterise Portuguese cancer-related patient organisations and analyse their views, motivations and experiences on patient involvement in cancer research.

Design

A multistakeholder group, comprising patient representatives and researchers, codesigned a questionnaire after a literature review, online sessions and collaborative mind maps. In May 2021, a survey was conducted among representatives of Portuguese cancer-related patient organisations, focusing on four dimensions: experience in cancer research; perception of its outcomes; motivations and expectations on patient involvement in research; and organisation characteristics.

Participants

Twenty-seven representatives from Portuguese cancer-related patient organisations responded to the questionnaire,

SUBMITTER: Roquette C 

PROVIDER: S-EPMC10824046 | biostudies-literature | 2024 Jan

REPOSITORIES: biostudies-literature