2017
DOI: 10.1057/s41292-017-0061-4
|View full text |Cite
|
Sign up to set email alerts
|

Chasing cures: Rewards and risks for rare disease patient organisations involved in research

Help me understand this report

Search citation statements

Order By: Relevance

Paper Sections

Select...
2
2
1

Citation Types

4
32
0
1

Year Published

2019
2019
2023
2023

Publication Types

Select...
7

Relationship

0
7

Authors

Journals

citations
Cited by 14 publications
(37 citation statements)
references
References 70 publications
4
32
0
1
Order By: Relevance
“…We included a total of 24 papers reporting on 23 studies; two papers reported on the same study (Appendix ). Of these, three were mixed methods studies, one was a qualitative study, and the rest (n = 19) were quantitative studies.…”
Section: Resultsmentioning
confidence: 99%
See 1 more Smart Citation
“…We included a total of 24 papers reporting on 23 studies; two papers reported on the same study (Appendix ). Of these, three were mixed methods studies, one was a qualitative study, and the rest (n = 19) were quantitative studies.…”
Section: Resultsmentioning
confidence: 99%
“…Five studies (25%) assessed the proportion of organizations for which there was evidence of industry funding and that acknowledged receiving that funding on their websites . In one study, funding information was provided by members of the organizations themselves, while in the remaining four, funding information was provided by pharmaceutical companies. The median proportion of organizations receiving industry funding and acknowledging it was 29% (IQR: 27%‐44%).…”
Section: Resultsmentioning
confidence: 99%
“…As hierarquias institucionais convencionais e as relações entre pacientes, médicos e pesquisadores são recriados por esses grupos de pacientes. Eles baseiam suas práticas em suas esperanças de encontrar uma cura que, por sua vez, legitime as formas como lidam com as suas próprias doenças, assim como, com o futuro de sua categoria de doenças (Mazanderani et al, 2018;Pinto et al, 2018). No desenvolvimento de pesquisas globais com células-tronco, por exemplo, as doações de indivíduos interessados -motivados por doenças que os afetam individualmente ou a suas famílias e amigos -e de instituições de caridade associadas, representavam em 2008, uma proporção maior do investimento financeiro no setor do que aquele com base em outras fontes Kaftantzi, 2008).…”
Section: Governança E Biossocialidades Globaisunclassified
“…Research that has analyzed the dynamics of hope in patient advocacies (Novas 2006; Langstrup 2011; Pinto, Martin, and Chenhall 2018) has explored the temporal and material dynamics of hope and provided insight into how hope for new therapies enrolls patients’ groups. That is, hope motivates groups’ involvement in, support for, and promotion of biomedical research as the most effective mode of gathering evidence for treatments.…”
Section: Affect and Emotion In Sts Research On Patients’ Groups’ Involvement In And Shaping Of Biomedical Researchmentioning
confidence: 99%
“…That is, hope motivates groups’ involvement in, support for, and promotion of biomedical research as the most effective mode of gathering evidence for treatments. Notably, Novas (2006, 295) attends to how hope figures in patient activism as a way of shortening “the temporal horizons of biomedicine’s potentialities to develop cures or therapies.” While sharing Novas’s interest in how hope operates temporally, Pinto, Martin, and Chenhall (2018, 128) pay attention to its emotional dimension. By analyzing patients’ groups’ “emotional investment in the quest for cure,” they show how engagements with biomedical research can enact “false hopes” that lead patient advocates to feel “frustrated” or even “disillusioned.” I develop this further by discussing hope not only in terms of how it connects to other emotions but also how it participates in the enactment of evidence.…”
Section: Affect and Emotion In Sts Research On Patients’ Groups’ Involvement In And Shaping Of Biomedical Researchmentioning
confidence: 99%