Our methods

The project focused on two hereditary cancer syndromes: the Hereditary Breast and Ovarian Cancer Syndrome (i.e., BRCA 1/2) and Lynch Syndrome. We adopt a mixed-methods approach combining an analysis of social media data and interviews.

We developed five interrelated work packages (WPs):

WP 1: Previvorship on social media

We collected content about BRCA 1/2 and/or Lynch Syndrome posted by Twitter (public accounts), TikTok (public accounts), Instagram (public accounts) and Facebook (public pages) over the course of 12 months.

We used a combination of text mining, discourse analysis and social network analysis techniques to identify core themes, key content producers and interaction dynamics.

Objective: This enhanced the understanding of previvorship-related content and users on different social media platforms

WP 2: Platform affordances and constraints

Based on WP1 findings, we conducted go-along semi-structured interviews with between 5 and 10 users engaged in the conversation about each condition for each social media platform. The go-along format allowed us to develop a collaborative approach with our interviewees, enabling elicitation of users’ engagement with both the platforms and the conversations.

Objective: This provided insight into how users shape and share content on the basis of platforms’ a) privacy settings and data use; b) moderation policies and c) algorithmic management of content and users.

WP 3: Previvors’ self and identity on and off social media platforms

We approached advocacy organisations to recruit 10 respondents for each condition to undertake a last set of semi-structured interviews. This set of interviews focused on practices of self in relation to cancer risk management and responsibility and investigate the extent to which platforms contribute to these practices.

Objective: This provided insight into how social media practices intertwine with the emergence of new subjectivities around cancer genetic risk.

WP 4: Lay understanding of cancer genetic risk

This WP focused on combining findings from WP1 and WP2.

Objective: This provided a comprehensive assessment of if and how social media use can ultimately affect lay understandings of cancer genetic risk and responsibility.

WP 5: Health professionals and health and platform policy

This WP synthesized findings from WP2 and WP4 for health professionals and health and platform policy.

Objective: This provided guidance on how to 1) meet the information needs of previvors and 2) challenge health misinformation flows.

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