Telling Our Stories Online: Researching ‘Previvorship’ in the Social Media Era

Summary In this episode of The Positive Gene Podcast, host Sara Kavanaugh takes the mic on the road in London with Dr. Stefania Vicari and Dr. Hannah Ditchfield of the University of Sheffield. Together, they explore how research into social media is reshaping what we know about hereditary cancer, advocacy, and the very word previvor.

Why does this matter? Because our digital footprints tell powerful stories — and understanding them helps us:

• See how platforms influence stigma, visibility, and advocacy

• Identify misinformation versus authentic support

• Recognize the importance of representation and inclusivity in health narratives

• Give both researchers and clinicians new insight into patient experience

This conversation highlights how essential research is in bridging the gap between lived experience, digital culture, and health care.

 

Resources & Links Mentioned

• University of Sheffield Cancer Research – Previvorship in the Platform Society: https://sites.google.com/sheffield.ac.uk/previvorship
• Instagram: https://www.instagram.com/previvorship_research/
• Sage Journal: https://journals.sagepub.com/doi/10.1177/20563051251340862
• FORCE: Facing Our Risk of Cancer Empowered – https://www.facingourrisk.org
• Lynch Syndrome UK – https://lynch-syndrome-uk.org
• Alive and Kick’n – https://aliveandkickn.org
• FORCE XRAY – https://www.facingourrisk.org/XRAY

🎧 Listen now on your favorite podcast app and be sure to follow on Instagram @positivegenepodcast

 

Disclaimer: This podcast is for informational purposes only and is not a substitute for professional medical advice. Always consult your healthcare provider with any questions about your health.