P406: Partnering with patients to explore the psychosocial and socioeconomic impacts of hereditary cancer syndromes

摘要: MethodsSix patient partners from 3 Canadian provinces with a hereditary breast and ovarian cancer syndrome or Lynch syndrome were recruited from team members’ networks. Regular meetings among study principal investigators, staff and patient partners provide consistent communication and co-development opportunities.ResultsPatient partners were invited to engage across all phases of the study: reviewing the grant application, co-developing the study design and materials, and ultimately assisting with recruitment, data analysis, and knowledge dissemination. Offering choice in level of involvement is best practice for patient engagement and has been appreciated by patient partners as affording them flexibility around their contributions. Patient partners meet quarterly with the study team, with email communication in between, to provide feedback on study design and materials. Opportunities to review study …