The Critical, Multidimensional Role of Patient Advocacy Groups in Rare Disease

2021 ◽  
pp. 59-74
Author(s):  
Keri McDonough
Keyword(s):  
Rare Disease ◽  
Patient Advocacy ◽  
Advocacy Groups ◽  
Patient Advocacy Groups

scholarly journals Pharmaceuticals and the consumer movement: the ambivalences of ‘patient power'

2004 ◽  
Vol 28 (2) ◽  
pp. 228 ◽  
Author(s):  
Hans Lofgren
Keyword(s):  
Health System ◽  
Patient Advocacy ◽  
Advocacy Groups ◽  
Power Structures ◽  
Industry Funding ◽  
Precise Nature ◽  
Consumer Movement ◽  
Neoliberal Governance ◽  
Patient Advocacy Groups

Consumer and patient advocacy groups (PAGs) are important participants in the politics of pharmaceuticals. Yet very little is known about the precise nature and extent of their influence. It is argued in this article that PAGs fulfil a mixed role within the health system at national and transnational levels, and that they are at times fully incorporated into economic and political power structures. Their frequent dependence on pharma industry funding is of particular concern. PAGs provide a means of direct industry interaction with the final customer, thereby partially bypassing and putting additional pressure on doctors and regulators. The article presents the case for research to establish a better empirical base for discussions about the role of PAGs within contemporary neoliberal governance structures.

scholarly journals Barriers to accrual and enrollment in brain tumor trials.

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. 2024-2024 ◽  
Author(s):  
Eudocia Quant Lee ◽  
Ugonma Nnenna Chukwueke ◽  
Shawn L. Hervey-Jumper ◽  
John Frederick De Groot ◽  
Jose Pablo Leone ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Response Assessment ◽  
Patient Advocacy ◽  
Cooperative Groups ◽  
Advocacy Groups ◽  
Oncology Patient ◽  
Clinical Trial Accrual ◽  
Multi Stakeholder ◽  
Patient Advocacy Groups ◽  
Major Impediment

2024 Background: A major impediment to improving neuro-oncology outcomes is poor clinical trial accrual. Methods: We convened a multi-stakeholder group including Society for Neuro-Oncology, Response Assessment in Neuro-Oncology, patient advocacy groups, clinical trial cooperative groups, and other partners to determine how we can improve trial accrual. Results: We describe selected factors contributing to poor trial accrual and possible solutions. Conclusions: We will implement strategies with the intent to double trial accrual over the next 5 years. [Table: see text]

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