Citizens’ juries can bring public voices on overdiagnosis into policy making

Degeling, Chris; Thomas, Rae; Rychetnik, Lucie

doi:10.1136/bmj.l351

Cited by 6 publications

(3 citation statements)

References 36 publications

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“…Community juries and other forms of 'mini-publics' are an established and appropriate method of incorporating public values and preferences into health policy decision-making [55]. Unlike focus groups and surveys, they involve information exchange and constructive dialogue between members of the public and experts, with adequate time for consideration [56,57].…”

Section: Methodsmentioning

confidence: 99%

Community perspectives on the benefits and risks of technologically enhanced communicable disease surveillance systems: a report on four community juries

et al. 2020

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Background: Outbreaks of infectious disease cause serious and costly health and social problems. Two new technologiespathogen whole genome sequencing (WGS) and Big Data analyticspromise to improve our capacity to detect and control outbreaks earlier, saving lives and resources. However, routinely using these technologies to capture more detailed and specific personal information could be perceived as intrusive and a threat to privacy. Method: Four community juries were convened in two demographically different Sydney municipalities and two regional cities in New South Wales, Australia (western Sydney, Wollongong, Tamworth, eastern Sydney) to elicit the views of well-informed community members on the acceptability and legitimacy of:

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Section: Methodsmentioning

confidence: 99%

Community perspectives on the benefits and risks of technologically enhanced communicable disease surveillance systems: a report on four community juries

et al. 2020

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“…Early diagnosis also impacts society through overdiagnosis and overtreatment. The risk of overdiagnosis and overtreatment refers to decisions made by physicians that bring no patient benefit, that occurs with the widening of disease categories and how these alter diagnostic processes [72][73][74]. Consequently, patient populations are increased without rigorous study of potential harms.…”

Section: Ethics Of Early Diagnosismentioning

confidence: 99%

Mild Cognitive Impairment in Relation to Alzheimer’s Disease: An Investigation of Principles, Classifications, Ethics, and Problems

Lee

2023

Neuroethics

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Mild Cognitive Impairment (MCI) is a diagnostic category indicating cognitive impairment which does not meet diagnostic criteria for dementia such as Alzheimer’s disease. There are public health concerns about Alzheimer’s disease (AD) prompting intervention strategies to respond to predictions about the impacts of ageing populations and cognitive decline. This relationship between MCI and AD rests on three interrelated principles, namely, that a relationship exists between AD and MCI, that MCI progresses to AD, and that there is a reliable system of classification of MCI. However, there are also several ethical issues and problems arising in the AD/MCI relationship. These include early diagnosis and interventions, the effects on people with MCI, and the newer neuroimaging and neuropharmacological approaches used in diagnosis and treatment. All these issues pose questions about the principles of MCI in relation to AD, with implications for how MCI is understood, diagnosed, treated, and experienced by patients. This article analyses four challenging areas for neuroethics: the definition and diagnosis of MCI; MCI in relation to AD; clinical implications of MCI for ethical disclosure, diagnosis, and treatment; and the research implications of MCI. The significant connections between these areas are often overlooked, together with uncertainties overall. Patients, healthcare systems and society are best served by informed clinicians, academics and researchers. After 35 years, the store of MCI knowledge is expanding and evolving.

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“…Research studies have generally fallen into two groups: those that aim to determine the best way to involve patients and the general public in specific HTA and resource allocation decisions (including Wortley et al, 2016b, Wortley et al, 2016aand Degeling et al, 2015 and those that aim to determine their more general values and preferences regarding HTA and resource allocation. The latter has relied primarily on quantitative methods such as surveys and discrete choice experiments (including Chim et al, 2017, Chim et al, 2019, Linley and Hughes, 2013and Green and Gerard, 2009 but there is an increasing use of deliberative methods such as focus groups (Schindler et al, 2018) and citizens juries (Degeling et al, 2019;Menon and Stafinski, 2008).…”

Section: Introductionmentioning

confidence: 99%

Consumer perspectives of accelerated access to medicines: a qualitative study

Pace

Ghinea

Pearson

et al. 2021

JHOM

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PurposeIn this study, the authors aimed to explore consumer perspectives on accelerated access to medicines. The authors were particularly interested in how they balance competing considerations of safety, efficacy, equity and access; whether and how their views change when there are different levels of uncertainty surrounding the safety and efficacy of new medicines; and the procedures that they think should be used to make decisions about accelerated access to new medicines.Design/methodology/approachThis was an exploratory qualitative study. Thirteen semi-structured interviews with patient advocates and two focus groups with patients were conducted and analysed thematically. Interviews and focus groups were audio recorded and transcribed verbatim. Data were analysed through inductive thematic analysis.FindingsParticipants outlined a range of justifications for accelerated access, including addressing unmet medical needs and encouraging further research and development. However, they were also cognisant of the potential risks and viewed ongoing data collection, disinvestment and market withdrawal as ways to address these. They also emphasised the importance of transparent decisions being made by people with relevant expertise, based on a thorough consideration of scientific evidence and stakeholder perspectives.Originality/valueThis is the first study to comprehensively explore Australian consumers' views of accelerated access to medicines. The results suggest that consumers want timely access to new medicines, but not at the expense of safety, efficacy, equity and sustainability. While accelerated access programs are likely to be welcomed by consumers, they must be fully informed of their conditions and limitations, and robust post-market data surveillance must be implemented and enforced to protect the interests of both individual patients and the broader community.

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Citizens’ juries can bring public voices on overdiagnosis into policy making

Abstract: As practitioners and policy makers struggle to manage the risks and harms of overdiagnosis, Chris Degeling and colleagues contend that citizens’ juries offer a way forward

Cited by 6 publications

References 36 publications

Community perspectives on the benefits and risks of technologically enhanced communicable disease surveillance systems: a report on four community juries

Community perspectives on the benefits and risks of technologically enhanced communicable disease surveillance systems: a report on four community juries

Mild Cognitive Impairment in Relation to Alzheimer’s Disease: An Investigation of Principles, Classifications, Ethics, and Problems

Consumer perspectives of accelerated access to medicines: a qualitative study

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