The final report from the project Previvorship in the Platform Society is now out in
the world!
Prior to the start of the NeGen-SOS project, Stefania Vicari and Hannah Ditchfield
worked for just over three years (2022-2025) to explore the role of everyday social
media for individuals at high risk of cancer. The final report draws on social media
analyses, interviews with carriers of hereditary cancer syndromes (specifically BRCA
and Lynch syndrome) and views from advocates, researchers and cancer survivors and
previvors.
The report highlights the opportunities and challenges social media present, both to
those who want to share their experience on these platforms and those who use them
to connect and learn from others. We draw on our findings to offer practical
recommendations for creators, social media users, healthcare professionals, and
platforms.
The report is available on the project website.
We are especially thankful to the participants who shared their experiences and stories
with us. We also thank those who contributed their views to the research analysis, including
representatives from advocacy organisations (Lisa Bancroft & Christen Williams from
BRCA+ Chat, Lydia Brain from The Eve Appeal, Roberta Horgan from Lynch
Syndrome Ireland, Tracy Smith from Lynch Syndrome UK, researchers (Marleah
Dean Kruzel, PhD, Kelly Kohut, Kelly Lloyd, Mariah Wellman, PhD), the project
consultant Julian Barwell and our project participants Ajay Dave, Alicia Maslar, Claire
Littley, Georgia Hurst, Gladys Clausen, James Mcmillan, Jenny Davidson, Jessica
Mertz, Katherine Lewandowski, Lawrence Kosova, Maggie Muir, Sara Kavanaugh,
Scarlett Shiloh, Shelley Nott, Susan Walton and others who wish to remain anonymous.
Finally, we would like to thank Lynch Syndrome UK and FORCE: Facing Our Risk of
Cancer Empowered to help us reach out to the BRCA and Lynch Syndrome communities and The Leverhulme Trust for funding the research.