2023 ACMG Annual Clinical Genetics Meeting Digital Edition: Poster Gallery-Partnering with patients to explore the psychosocial and socioeconomic impacts of hereditary cancer syndromes

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

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This document describes the engagement of patient partners in a research grant exploring the economic and psychosocial impacts of hereditary cancer syndromes (HCS) in three provinces in Canada. The study involves six patient partners who have lived experience with either Hereditary Breast and Ovarian Cancer Syndrome or Lynch Syndrome. The patient partners were involved in various aspects of the study, including reviewing the grant application, co-developing the study design, assisting with recruitment, data analysis, and knowledge dissemination. Their input has shaped and refined study materials, mitigating potentially distressing questions and highlighting the importance of positive impacts from knowing one's hereditary risk. The role of patient partners in the study is non-tokenistic and strives towards true research co-development. <br /><br />Several best practices have emerged from the integration of patient partners into the research process, including valuing their contributions, respecting their time, and allowing them to engage in ways that suit their strengths and interests. The patient partners have felt engaged as equals on the team and believe their contributions have a meaningful impact on shaping the study. For the patient partners, being able to provide a voice for their real-life experiences and needs, particularly regarding the psychosocial impact of living with a genetic syndrome, is of paramount importance. Overall, the engagement of patient partners in this research grant has resulted in patient-identified research questions and outcomes.

Asset Subtitle

Co-Author - Jordan Sam, MHSc; Co-Author - Holly Etchegary, PhD; Presenting Author - Marc Clausen, MA; Co-Author - Derrick Bishop, NA; Co-Author - Julee Pauling, NA; Co-Author - Claudia Pavao, NA; Co-Author - Catriona Remocker, PhD(c), RCC; Co-Author - Teresa Tiano, NA; Co-Author - Angelina Tilley, NA; Co-Author - Chloe Mighton, MSc; Co-Author - Sepideh Rajeziesfahani, MSc; Co-Author - Ridhi Gopalakrishnan, HBSc(IPR); Co-Author - Melyssa Aronson, CGC; Co-Author - Lesa Dawson, MD; Co-Author - Andrea Eisen, MD; Co-Author - Tracy Graham, CGC; Co-Author - Jane Green, PhD, OC ONL, Hon FCCMG, FCAHS; Co-Author - Sevtap Savas, PhD; Co-Author - Sophie Sun, MD; Co-Author - Kevin E. Thorpe, MMath; Co-Author - Kasmintan A. Schrader, MBBS, PhD, FRCPC, DABMGG; Co-Author - Yvonne Bombard, PhD;

Meta Tag

Cancer Syndromes

Education

Ethical Legal and Social Issues

Methodology

Policy Issues

Psychosocial Issues

Public Patient and Professional Education

Co-Author Jordan Sam, MHSc

Co-Author Holly Etchegary, PhD

Co-Author Derrick Bishop, NA

Co-Author Julee Pauling, NA

Co-Author Claudia Pavao, NA

Co-Author Catriona Remocker, PhD(c), RCC

Co-Author Teresa Tiano, NA

Co-Author Angelina Tilley, NA

Co-Author Chloe Mighton, MSc

Co-Author Sepideh Rajeziesfahani, MSc

Co-Author Ridhi Gopalakrishnan, HBSc(IPR)

Co-Author Melyssa Aronson, CGC

Co-Author Lesa Dawson, MD

Co-Author Andrea Eisen, MD

Co-Author Tracy Graham, CGC

Co-Author Jane Green, PhD, OC ONL, Hon FCCMG, FCAHS

Co-Author Sevtap Savas, PhD

Co-Author Sophie Sun, MD

Co-Author Kevin E. Thorpe, MMath

Co-Author Kasmintan A. Schrader, MBBS, PhD, FRCPC, DABMGG

Co-Author Yvonne Bombard, PhD

Presenting Author Marc Clausen, MA

Keywords

patient partners

research grant

economic impacts

psychosocial impacts

hereditary cancer syndromes

HCS

patient engagement

Hereditary Breast and Ovarian Cancer Syndrome

Lynch Syndrome

research co-development