Preventing “Exit,” Eliciting “Voice”

Galasso, Ilaria; Geiger, Susi

doi:10.1093/oso/9780198865223.003.0002

Cited by 4 publications

(2 citation statements)

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“…Through using Brown and Bahri’s framework [ 12 ], we detected a lack of breadth in existing qualitative studies, due to the lack of diversity in the patients that have been engaged both socio-economically and geographically, and a narrow focus on the established ways of augmenting, rather than redefining, established clinical trial research [ 61 ]. For example, little or no attention in trial design is currently given to the perspectives of patients who do not want to be involved in research.…”

Section: Discussionmentioning

confidence: 99%

How do patients and other members of the public engage with the orphan drug development? A narrative qualitative synthesis

Frost

Hall

Taylor

et al. 2023

Orphanet J Rare Dis

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Background The diversity of patient experiences of orphan drug development has until recently been overlooked, with the existing literature reporting the experience of some patients and not others. The current evidence base (the best available current research) is dominated by quantitative surveys and patient reported outcome measures defined by researchers. Where research that uses qualitative methods of data collection and analysis has been conducted, patient experiences have been studied using content analysis and automatic textual analysis, rather than in-depth qualitative analytical methods. Systematic reviews of patient engagement in orphan drug development have also excluded qualitative studies. The aim of this paper is to review qualitative literature about how patients and other members of the public engage with orphan drug development. Methods We conducted a systematic search of qualitative papers describing a range of patient engagement practices and experiences were identified and screened. Included papers were appraised using a validated tool (CASP), supplemented by reporting guidance (COREQ), by two independent researchers. Results 262 papers were identified. Thirteen papers reported a range of methods of qualitative data collection. Many conflated patient and public involvement and engagement (PPIE) with qualitative research. Patients were typically recruited via their physician or patient organisations. We identified an absence of overarching philosophical or methodological frameworks, limited details of informed consent processes, and an absence of recognisable methods of data analysis. Our narrative synthesis suggests that patients and caregivers need to be involved in all aspects of trial design, including the selection of clinical endpoints that capture a wider range of outcomes, the identification of means to widen access to trial participation, the development of patient facing materials to optimise their decision making, and patients included in the dissemination of trial results. Conclusions This narrative qualitative synthesis identified the explicit need for methodological rigour in research with patients with rare diseases (e.g. appropriate and innovative use of qualitative methods or PPIE, rather than their conflation); strenuous efforts to capture the perspectives of under-served, under-researched or seldom listened to communities with experience of rare diseases (e.g. creative recruitment and wider adoption of post-colonial practices); and a re-alignment of the research agenda (e.g. the use of co-design to enable patients to set the agenda, rather than respond to what they are being offered).

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Section: Discussionmentioning

confidence: 99%

How do patients and other members of the public engage with the orphan drug development? A narrative qualitative synthesis

Frost

Hall

Taylor

et al. 2023

Orphanet J Rare Dis

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“…To be effective, this involvement needs to move beyond consultation and superficial patient-public involvement measures toward proper cogovernance and coleadership. 44 We are fully conscious that this may create concrete practical issues in terms of length and depth of community involvement, and we will discuss below several basic considerations that need to be engaged with for such collective governance to be realised.…”

Section: Beyond Engagement: Cogovernance By 'People Like Us'mentioning

confidence: 99%

Genetic research and the collective good: participants as leaders to reconcile individual and public interests

Galasso,

Geiger

2023

J Med Ethics

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This paper problematises the notions of public or common good as weighed against individual sovereignty in the context of medical research by focusing on genetic research. We propose the notion of collective good as the good of the particular collective in which the research was conducted. We conducted documentary and interview-based research with participant representatives and research leaders concerned with participant involvement in leading genetic research projects and around two recent genetic data controversies: the case of the UK Wellcome Sanger Institute, accused of planning unauthorised commercialisation of African DNA samples, and the case of the company Genuity Science, which planned genetic research on brain tumour samples in Ireland with no explicit patient consent. We advocate for greater specificity in circumscribing the collective to which genetic research relates and for greater efforts in including representatives of this collective as research coleaders in order to enable a more inclusive framing of the good arising from such research. Such community-based participant cogovernance and coleadership in genetic research is vital especially when minorities or vulnerable groups are involved, and it centrally requires community capacity building to help collectives articulate their own notions of the collective good.

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Precision Medicine for Whom? Public Health Outputs from “Genomics England” and “All of Us” to Make Up for Upstream and Downstream Exclusion

Galasso

2023

The American Journal of Bioethics

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Preventing “Exit,” Eliciting “Voice”

Cited by 4 publications

References 0 publications

How do patients and other members of the public engage with the orphan drug development? A narrative qualitative synthesis

How do patients and other members of the public engage with the orphan drug development? A narrative qualitative synthesis

Genetic research and the collective good: participants as leaders to reconcile individual and public interests

Precision Medicine for Whom? Public Health Outputs from “Genomics England” and “All of Us” to Make Up for Upstream and Downstream Exclusion

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