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

Pinto, Deirdre Frances; Martin, Dominique; Chenhall, Richard

doi:10.1057/s41292-017-0061-4

Cited by 14 publications

(37 citation statements)

References 70 publications

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“…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%

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Financial relationships between patient and consumer representatives and the health industry: A systematic review

Khabsa

Semaan

El‐Harakeh

et al. 2019

Health Expectations

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Background Patients and consumers are increasingly engaged in health policymaking, research and drug regulation. Having financial relationships with the health industry creates situations of conflicts of interest (COI) and might compromise their meaningful and unbiased participation. Objective To synthesize available evidence on the financial relationships between the health industry and patient and consumer representatives and their organizations. Methods We systematically searched MEDLINE and EMBASE. We selected studies and abstracted data in duplicate and independently. We reported on outcomes related to financial relationships of individuals with, and/or funding of organizations by the health industry. Results We identified a total of 14 510 unique citations, of which 24 reports of 23 studies were eligible. Three studies (13%) addressed the financial relationship of patient and consumer representatives with the health industry. Of these, two examined the proportion of public speakers in drug regulatory processes who have financial relationships; the proportions in the two studies were 25% and 19% respectively. Twenty studies (87%) addressed funding of patient and consumer organizations. The median proportion of organizations that reported funding from the health industry was 62% (IQR: 34%‐69%) in questionnaire surveys, and 75% (IQR: 58%‐85%) in surveys of their websites. Among organizations for which there was evidence of industry funding, a median proportion of 29% (IQR: 27%‐44%) acknowledged on their websites receiving that funding. Conclusion Financial relationships between the health industry and patient and consumer representatives and their organizations are common and may not be disclosed. Stricter regulation on disclosure and management is needed.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Financial relationships between patient and consumer representatives and the health industry: A systematic review

Khabsa

Semaan

El‐Harakeh

et al. 2019

Health Expectations

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show abstract

“…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

Biocapital, biopolítica e biossocialidades no contexto global de gênero: revisão teórica e evidências*

Acero

2021

Cad. Pagu

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Resumo O artigo discute tendências dominantes e contra tendências em genética e biotecnologia da saúde, seguindo principalmente as perspectivas teóricas de Rose, Haraway e Braidotti e seus seguidores, reformuladas para o contexto do desenvolvimento, e em direção a uma recriação positiva das relações de gênero e do desenvolvimento sustentável. Os elementos conceituais dessas teorias incluem: a ascensão do cidadão biopolítico, o desenvolvimento de biossocialidades e a construção da biopolítica focada na responsabilidade genética e na ética do corpo.

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“…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%

Moving Evidence: Patients’ Groups, Biomedical Research, and Affects

Lindén

2020

Science, Technology, & Human Values

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Research in science and technology studies has analyzed how patients’ groups engage in practices that connect biomedicine and patient experience in order to become involved in the shaping of biomedical research. However, there has been limited attention to the affective dimensions of such practices. Based on ethnographic fieldwork with a gynecological cancer patients’ group in Sweden, this article focuses on practices that aim to influence researchers and research institutions to prioritize biomedical gynecological cancer research. It analyzes how “affects” are woven through these practices and pays attention to the entanglements of affects, biomedical research, and lay experience they involve. The article explores the relation between the gynecological cancer patients’ group and biomedical research as a set of material-semiotic practices of “moving evidence.” These practices of moving evidence (1) enact gynecological cancer as under-researched; (2) collect and produce new “evidence”; (3) “mobilize” the evidence at public events, in interactions with biomedical researchers, and in different online settings; and (4) entangle affects with biomedical and experiential evidence to enact (a lack of) gynecological cancer biomedical research as a matter of concern.

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

Cited by 14 publications

References 70 publications

Financial relationships between patient and consumer representatives and the health industry: A systematic review

Financial relationships between patient and consumer representatives and the health industry: A systematic review

Biocapital, biopolítica e biossocialidades no contexto global de gênero: revisão teórica e evidências*

Moving Evidence: Patients’ Groups, Biomedical Research, and Affects

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