Final published version
Licence: CC BY: Creative Commons Attribution 4.0 International License
Research output: Contribution to Journal/Magazine › Journal article › peer-review
Research output: Contribution to Journal/Magazine › Journal article › peer-review
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TY - JOUR
T1 - Accessing targeted therapies for cancer
T2 - self and collective advocacy alongside and beyond mainstream cancer charities
AU - Kerr, Anne
AU - Chekar, Choon Key
AU - Swallow, Julia
AU - Ross, Emily
AU - Cunningham-Burley, Sarah
PY - 2021/1/31
Y1 - 2021/1/31
N2 - As precision oncology has evolved, patients and their families have become more involved in efforts to access these treatments via fundraising and campaigning that take place outside of the larger cancer charities. In this paper, we explore the solidarities, networks, and emotional work of the UK-based access advocates, drawing on the stories of nine advocates, which included interviews and content analyses of their social media posts and coverage of their case in news, commentary, and fundraising websites. We consider the emotional and knowledge work of building networks that spanned consumerist and activist agendas, forged individual and collective goals, and orientations toward the public, private, and third sectors as part of securing support and access. Through these various practices, the actors we have studied cultivated personal advantage and solidarities with other patients and advocates, and in so doing engaged in self and collective advocacy alongside and beyond mainstream cancer charities.
AB - As precision oncology has evolved, patients and their families have become more involved in efforts to access these treatments via fundraising and campaigning that take place outside of the larger cancer charities. In this paper, we explore the solidarities, networks, and emotional work of the UK-based access advocates, drawing on the stories of nine advocates, which included interviews and content analyses of their social media posts and coverage of their case in news, commentary, and fundraising websites. We consider the emotional and knowledge work of building networks that spanned consumerist and activist agendas, forged individual and collective goals, and orientations toward the public, private, and third sectors as part of securing support and access. Through these various practices, the actors we have studied cultivated personal advantage and solidarities with other patients and advocates, and in so doing engaged in self and collective advocacy alongside and beyond mainstream cancer charities.
KW - precision oncology
KW - access
KW - patients
KW - solidarities
KW - advocacy
U2 - 10.1080/14636778.2020.1868986
DO - 10.1080/14636778.2020.1868986
M3 - Journal article
VL - 40
SP - 112
EP - 131
JO - New Genetics and Society
JF - New Genetics and Society
SN - 1463-6778
IS - 1
ER -