Oncogene-driven advocacy: Collective expertise and therapeutic actionability

Abstract

This paper is intended as a contribution to the social science literature on Patient Advocacy Groups (PAGs). It examines the recent emergence and development of cancer patient organizations that self-define as “oncogene-focused,” that is, as centered on tumor-driving genetic mutations that offer novel therapeutic opportunities for tumors to be targeted by precision drugs. Drawing on qualitative methods including interviews with representatives of oncogene focused PAGs, analysis of the groups’ publications (biomedical journals, eNewsletters), websites, and social media activity, the paper explores the characteristics of these PAGs’ forms of activism. It shows that their common denominator is a focus on patient survival. This shared goal translates into a form of activism that centers on therapeutic actionability, that is, a set of initiatives aiming at the articulation of research, clinical trials, and care to improve the patients’ quality of life and maximize survival thanks to awareness of and access to the latest therapies. Beyond individual differences between PAGs, we observe the increasingly seamless entanglement of their activities. Their mutually supportive interventions result in the establishment of an ecosystemic form of activism that also succeeds in mobilizing clinicians and researchers at the increasingly porous interface between research and care.