Coming Full Circle: Reflections and Inspirations from a Cystic Fibrosis Patient Scientist Panel

Abstract

Care for many progressive chronic diseases continues to improve, allowing patients to survive and thrive for longer periods of time1. People living with such conditions may now find themselves able to achieve long-term goals in education and career development2. Many people now occupy the dual roles of scientist and patient3. This commentary article synthesizes experiences of scientists and advocates with the progressive genetic disease cystic fibrosis (CF) who collaborated on a career development session for the Cystic Fibrosis Foundation’s inaugural ResearchCon event in 2019. It explores how such collaborations affirm and transform individual perspectives on patient science and its importance in broader scientific research agenda setting. We first share our own individual insights about the experience and impact of the ResearchCon panel session before progressing to discussion and future directions centering the shared insights from one another’s reflections.

The Impact of Transmissible Microbes: How the Cystic Fibrosis Community Mobilized Against Cepacia

“…Within CF research, ongoing investigations of CF pathogens have expanded to investigate the CF lung and gut microbiomes (Caverly, Zhao, and LiPuma 2015;Madan et al 2012). For the CF community, the social implications of infectious risk remain an enduring consequence of cross-infection, one that has pushed people with CF to become pioneers of virtual socialization (Nowakowski et al 2022). As the boundaries between genetic and infectious diseases become increasingly porous, the CF story provides a clear example of this blurring while offering examples of the ethical, legal, and social implications of newfound microbial knowledge.…”