What Is Public Deliberation?

Blacksher, Erika; Diebel, Alice; Forest, Pierre Gerlier; Goold, Susan Dorr; Abelson, Julia

doi:10.1002/hast.26

Cited by 99 publications

(105 citation statements)

References 11 publications

Supporting

Mentioning

101

Contrasting

Unclassified

Order By: Relevance

“…This study also provides evidence of the public's ability to form coherent judgments and expectations about a new or future policy issue using structured, facilitated deliberative discussion that took place among a small group of citizens over several hours using recognized methods. [22][23][24][25] Although not intended to represent the views of the general population, the findings contribute novel and timely insights into the perceptions, values and concerns that a group of citizens and potential users hold toward personalized medicine. Importantly, the citizens' panel was concerned that personalized genomic tests might be used to ration care.…”

Section: Discussionmentioning

confidence: 99%

“…Collectively, these represent validated methods of deliberative processes, 21 which previous studies have shown to elicit in-depth views, emphasizing informed, values-based reasoning, with the goal of reaching common ground on complex, value-laden topics. [22][23][24][25][26] These deliberative methods are increasingly used to elicit public values on genomics policy issues. 17,24,25,27 The focus of this paper is on the panel's review and deliberations of GEP for early stage breast cancer, and the general topic of personalized medicine.…”

Section: Data Collection and Analysismentioning

confidence: 99%

See 1 more Smart Citation

Citizens' perspectives on personalized medicine: a qualitative public deliberation study

et al. 2013

Self Cite

View full text Add to dashboard Cite

Our objective was to explore citizens' informed and reasoned values and expectations of personalized medicine, a timely yet novel genomics policy issue. A qualitative, public deliberation study was undertaken using a citizens' reference panel on health technologies, established to provide input to the health technology assessment process in Ontario, Canada. The citizens' panel consisted of five women and nine men, aged 18-71 years, with one member selected from each health authority region. There were shared expectations among the citizens' panel members for the potential of personalized medicine technologies to improve care, provided they are deemed clinically valid and effective. These expectations were tempered by concerns about value for money and the possibility that access to treatment may be limited by personalized medicine tests used to stratify patients. Although they questioned the presumed technological imperative presented by personalized medicine technologies, they called for increased efforts to prepare the health-care system to effectively integrate these technologies. This study represents an early but important effort to explore public values toward personalized medicine. This study also provides evidence of the public's ability to form coherent judgments about a new policy issue. Concerned that personalized tests might be used to ration care, they suggested that treatment should be made available if patients wanted it, irrespective of tests that indicate little benefit. This issue raises clinical and policy challenges that may undermine the value of personalized medicine. Further efforts to deliberate with the public are warranted to inform effective, efficient and equitable translation of personalized medicine.

show abstract

Section: Discussionmentioning

confidence: 99%

Section: Data Collection and Analysismentioning

confidence: 99%

Citizens' perspectives on personalized medicine: a qualitative public deliberation study

et al. 2013

Self Cite

View full text Add to dashboard Cite

show abstract

“…Asveld et al, 2015Bronson, 2015). There is also a now well-developed body of literature, some of which comes from key Canadian scholars such as Michael Burgess, on the methodological particulars of how to deliver a deliberative process for assessing societal needs and concerns around innovation (see Blacksher et al, 2012;Einsiedel et …”

Section: An Important Question Is Thus: How Do Smart Farming's Decismentioning

confidence: 99%

Smart Farming: Including Rights Holders for Responsible Agricultural Innovation

Bronson¹

2018

TIM Review

140

View full text Add to dashboard Cite

“…Deliberative methods must meet exacting standards and are time consuming. 18 Community juries have considered PSA testing in Australia 19 20 and mammographic screening in New Zealand, where participants changed their recommendation at least partly because of potential harms from overdiagnosis. 21 Disseminating findings from juries could enhance community health literacy, leading to better informed citizens and more transparent decision making.…”

Section: Policy Directed Strategiesmentioning

confidence: 99%

Walking the tightrope: communicating overdiagnosis in modern healthcare

McCaffery

Jansen

Scherer

et al. 2016

BMJ

View full text Add to dashboard Cite

Communication that empowers the public, patients, clinicians, and policy makers to think differently about overdiagnosis will help support a more sustainable healthcare future for all, What are the key messages to be communicated?Understanding of overdiagnosis among the general public and health professionals is limited, so it is essential to communicate what it means for individuals, the health system, and society (box 1). By definition, overdiagnosis will not improve prognosis and will probably harm individuals (for example, by unnecessary intervention) or society (opportunity costs). For individuals, it is important to communicate the nature (physical or psychological), likelihood, and duration of the harms. For societies with free public healthcare, the financial strain and opportunity cost are usually at system level-resources wasted on unnecessary tests and treatments are unavailable for people in greater need. But in private healthcare systems, overdiagnosis can be a huge personal financial burden, even for those with insurance.Communication is further complicated because it is usually impossible to know whether an individual has been overdiagnosed or benefited from the diagnosis-overdiagnosis can only be observed at the aggregate level. Recent efforts to communicate the concept and likelihood of overdiagnosis in breast screening have had some success, albeit with much room for improvement. When given a patient decision aid including an infographic and icon array (figure⇓), 29% of women understood both the concept and quantitative outcomes of breast screening (including deaths avoided, false positive results, and overdiagnosis); 59% of women understood the conceptual information alone. Communication based strategies to mitigate overdiagnosisSeveral communication based strategies have been applied in the areas of overtesting and overtreatment and directed at individual, community, or policy levels (box 2). Strategies for individualsShared decision making is a consultation process where a clinician and patient jointly make a health decision. It changes Overdiagnosis occurs when a diagnosis is "correct" according to current professional standards but when the diagnosis or associated treatment has a low probability of benefiting the person diagnosed. 2 It is caused by a range of factors such as: • Use of increasingly sensitive tests that identify abnormalities that are indolent, non-progressive, or regressive (overdetection)• Expanded definitions of disease-for example, attention-deficit/hyperactivity disorder and dementia-and lowering of disease thresholds, such as osteoporosis (overdefinition)• Creation of pseudodiseases (also called disease mongering), such as low testosterone and restless leg syndrome• Clinicians' fear of missing a diagnosis or litigation• Public enthusiasm for screening or testing and desire for reassurance • Financial incentives Potential consequences of overdiagnosis• Psychological and behavioural effects of disease labelling• Physical harms and side effects of unnecessary tests or tr...

show abstract

What Is Public Deliberation?

Cited by 99 publications

References 11 publications

Citizens' perspectives on personalized medicine: a qualitative public deliberation study

Citizens' perspectives on personalized medicine: a qualitative public deliberation study

Smart Farming: Including Rights Holders for Responsible Agricultural Innovation

Walking the tightrope: communicating overdiagnosis in modern healthcare

Contact Info

Product

Resources

About