The Statistics Expert Group was convened at the request of the Infected Blood Inquiry to provide estimates of the number of infections and deaths from blood-borne infections including hepatitis B virus, human immunodeficiency virus, hepatitis C virus (HCV) and variant Creutzfeldt Jakob disease, as a direct result of contaminated blood and blood products administered in the United Kingdom of Great Britain and Northern Ireland (UK). In the absence of databases of HCV infections and related deaths for all nations of the UK, a statistical model was required to estimate the number of infections and subsequent deaths from HCV acquired from blood transfusions from January 1970 to August 1991. We present this statistical model in detail alongside the results of its application to each of the four nations in the UK. We estimated that 26 800 people (95% uncertainty interval 21 300–38 800) throughout the UK were chronically infected with HCV because of contaminated blood transfusions between January 1970 and August 1991. The number of deaths up to the end of 2019 that occurred as a result of this chronic infection is estimated to be 1820 (95% uncertainty interval 650–3320).
Large-scale societal issues such as public health crises highlight the need to communicate scientific information, which is often uncertain, accurately to the public and policy makers. The challenge is to communicate the inherent scientific uncertainty — especially about the underlying quality of the evidence — whilst supporting informed decision making. Little is known about the effects that such scientific uncertainty has on people’s judgments of the information. In three experimental studies (total N =6,489), we investigate the influence of scientific uncertainty about the quality of the evidence on people’s perceived trustworthiness of the information and decision making. We compare the provision of high, low, and ambiguous quality-of-evidence indicators against providing no such cues. Results show an asymmetric relationship: people react more strongly to cues of low quality of evidence than they do to high quality of evidence compared to no cue. While responses to a cue of high quality of evidence are not significantly different from no cue; a cue of low or uncertain quality of evidence is accompanied by lower perceived trustworthiness and lower use of the information in decision making. Cues of uncertain quality of evidence have a similar effect to those of low quality. These effects do not change with the addition of a reason for the indicated quality level. Our findings shed light on the effects of the communication of scientific uncertainty on judgment and decision making, and provide insights for evidence-based communications and informed decision making for policy makers and the public.
Background Bisphosphonate drugs can be used to improve the outcomes of women with breast cancer. Whilst many meta-analyses have quantified their potential benefits for patients, attempts at comprehensive quantification of potential adverse effects have been limited. We undertook a meta-analysis with novel methodology to identify and quantify these adverse effects. Methods We systematically reviewed randomised controlled trials in breast cancer where at least one of the treatments was a bisphosphonate (zoledronic acid, ibandronate, pamidronate, alendronate or clodronate). Neoadjuvant, adjuvant and metastatic settings were examined. Primary outcomes were adverse events of any type or severity (excluding death). We carried out pairwise and network meta-analyses to estimate the size of any adverse effects potentially related to bisphosphonates. In order to ascertain whether adverse effects differed by individual factors such as age, or interacted with other common adjuvant breast cancer treatments, we examined individual-level patient data for one large trial, AZURE. Findings We identified 56 trials that reported adverse data, which included a total of 29,248 patients (18,301 receiving bisphosphonate drugs versus 10,947 not). 24 out of the 103 different adverse outcomes analysed showed a statistically and practically significant increase in patients receiving a bisphosphonate drug compared with those not (2 additional outcomes that appeared statistically significant came only from small studies with low event counts and no clinical suspicion so are likely artifacts). Most of these 24 are already clinically recognised: ‘flu-like symptoms, fever, headache and chills; increased bone pain, arthralgia, myalgia, back pain; cardiac events, thromboembolic events; hypocalcaemia and osteonecrosis of the jaw; as well as possibly stiffness and nausea. Oral clodronate appeared to increase the risk of vomiting and diarrhoea (which may also be increased by other bisphosphonates), and there may be some hepatotoxicity. Four additional potential adverse effects emerged for bisphosphonate drugs in this analysis which have not classically be recognised: fatigue, neurosensory problems, hypertonia/muscle spasms and possibly dysgeusia. Several symptoms previously reported as potential side effects in the literature were not significantly increased in this analysis: constipation, insomnia, respiratory problems, oedema or thirst/dry mouth. Individual patient-level data and subgroup analysis revealed little variation in side effects between women of different ages or menopausal status, those with metastatic versus non-metastatic cancer, or between women receiving different concurrent breast cancer therapies. Conclusions This meta-analysis has produced estimates for the absolute frequencies of a range of side effects significantly associated with bisphosphonate drugs when used by breast cancer patients. These results show good agreement with previous literature on the subject but are the first systematic quantification of side effects and their severities. However, the analysis is limited by the availability and quality of data on adverse events, and the potential for bias introduced by a lack of standards for reporting of such events. We therefore present a table of adverse effects for bisphosphonates, identified and quantified to the best of our ability from a large number of trials, which we hope can be used to improve the communication of the potential harms of these drugs to patients and their healthcare providers.
Kevin McConway and David Spiegelhalter offer tips to statisticians communicating through the media, especially in the time of Covid-19.
Professor Kevin McConway and Professor Sir David Spiegelhalter discuss their experiences of communicating statistical research to the media and offer 12 tips for researchers to effectively engage with the media. The coronavirus pandemic has brought an unprecedented demand from the media for statistical commentary. Whereas a trip to a studio for a radio or TV interview was ... Continued
As increasing amounts of data accumulate on the effects of the novel coronavirus SARS-CoV-2 and the risk factors that lead to poor outcomes, it is possible to produce personalized estimates of the risks faced by groups of people with different characteristics. The challenge of how to communicate these then becomes apparent. Based on empirical work (total n = 5520, UK) supported by in-person interviews with the public and physicians, we make recommendations on the presentation of such information. These include: using predominantly percentages when communicating the absolute risk, but also providing, for balance, a format which conveys a contrasting (higher) perception of risk (expected frequency out of 10 000); using a visual linear scale cut at an appropriate point to illustrate the maximum risk, explained through an illustrative ‘persona’ who might face that highest level of risk; and providing context to the absolute risk through presenting a range of other ‘personas’ illustrating people who would face risks of a wide range of different levels. These ‘personas’ should have their major risk factors (age, existing health conditions) described. By contrast, giving people absolute likelihoods of other risks they face in an attempt to add context was considered less helpful. We note that observed effect sizes generally were small. However, even small effects are meaningful and relevant when scaled up to population levels.
Background The quality of evidence about the effectiveness of non-pharmaceutical health interventions is often low, but little is known about the effects of communicating indications of evidence quality to the public. Methods In two blinded, randomised, controlled, online experiments, US participants (total n = 2140) were shown one of several versions of an infographic illustrating the effectiveness of eye protection in reducing COVID-19 transmission. Their trust in the information, understanding, feelings of effectiveness of eye protection, and the likelihood of them adopting it were measured. Findings Compared to those given no quality cues, participants who were told the quality of the evidence on eye protection was ‘low’, rated the evidence less trustworthy (p = .001, d = 0.25), and rated it as subjectively less effective (p = .018, d = 0.19). The same effects emerged compared to those who were told the quality of the evidence was ‘high’, and in one of the two studies, those shown ‘low’ quality of evidence said they were less likely to use eye protection (p = .005, d = 0.18). Participants who were told the quality of the evidence was ‘high’ showed no statistically significant differences on these measures compared to those given no information about evidence quality. Conclusions Without quality of evidence cues, participants responded to the evidence about the public health intervention as if it was high quality and this affected their subjective perceptions of its efficacy and trust in the provided information. This raises the ethical dilemma of weighing the importance of transparently stating when the evidence base is actually low quality against evidence that providing such information can decrease trust, perception of intervention efficacy, and likelihood of adopting it.
• Take time to establish what decision the patient is considering and what factors they are weighing up in that decision—medical, financial, and social • Risk calculators can give an estimate of the risk of dying from contracting covid-19 given an individual’s characteristics, but the figures the tool provides will need to be given context before they can be a meaningful part of a decision • Consider an individual's risk from covid-19 in two parts; the risk of catching it and the risk of poor outcome if they do. Both can usually be modified to some extent
OBJECTIVES:To help people make decisions about the most effective mitigation measures against SARS-CoV-2 transmission in different scenarios, the likelihoods of transmission by different routes need to be quantified to some degree (however uncertain). These likelihoods need to be communicated in an appropriate way to illustrate the relative importance of different routes in different scenarios, the likely effectiveness of different mitigation measures along those routes, and the level of uncertainty in those estimates. In this study, a pragmatic expert elicitation was undertaken to supply the underlying quantitative values to produce such a communication tool. PARTICIPANTS:Twenty-seven individual experts from five countries and many scientific disciplines provided estimates. OUTCOME MEASURES:Estimates of transmission parameters, assessments of the quality of the evidence, references to relevant literature, rationales for their estimates and sources of uncertainty. RESULTS AND CONCLUSION:The participants' responses showed that there is still considerable disagreement among experts about the relative importance of different transmission pathways and the effectiveness of different mitigation measures due to a lack of empirical evidence. Despite these disagreements, when pooled, the majority views on each parameter formed an internally consistent set of estimates (for example, that transmission was more likely indoors than outdoors, and at closer range), which formed the basis of a visualisation to help individuals and organisations understand the factors that influence transmission and the potential benefits of different mitigation measures.
Objectives To develop a new interface for the widely used prognostic breast cancer tool: Predict: Breast Cancer. To facilitate decision-making around post-surgery breast cancer treatments. To derive recommendations for communicating the outputs of prognostic models to patients and their clinicians. Method We employed a user-centred design process comprised of background research and iterative testing of prototypes with clinicians and patients. Methods included surveys, focus groups and usability testing. Results The updated interface now caters to the needs of a wider audience through the addition of new visualisations, instantaneous updating of results, enhanced explanatory information and the addition of new predictors and outputs. A programme of future research was identified and is now underway, including the provision of quantitative data on the adverse effects of adjuvant breast cancer treatments. Based on our user-centred design process, we identify six recommendations for communicating the outputs of prognostic models including the need to contextualise statistics, identify and address gaps in knowledge, and the critical importance of engaging with prospective users when designing communications. Conclusions For prognostic algorithms to fulfil their potential to assist with decision-making they need carefully designed interfaces. User-centred design puts patients and clinicians needs at the forefront, allowing them to derive the maximum benefit from prognostic models.
Throughout the COVID-19 pandemic, social and traditional media have disseminated predictions from experts and nonexperts about its expected magnitude. How accurate were the predictions of ‘experts’—individuals holding occupations or roles in subject-relevant fields, such as epidemiologists and statisticians—compared with those of the public? We conducted a survey in April 2020 of 140 UK experts and 2,086 UK laypersons; all were asked to make four quantitative predictions about the impact of COVID-19 by 31 Dec 2020. In addition to soliciting point estimates, we asked participants for lower and higher bounds of a range that they felt had a 75% chance of containing the true answer. Experts exhibited greater accuracy and calibration than laypersons, even when restricting the comparison to a subset of laypersons who scored in the top quartile on a numeracy test. Even so, experts substantially underestimated the ultimate extent of the pandemic, and the mean number of predictions for which the expert intervals contained the actual outcome was only 1.8 (out of 4), suggesting that experts should consider broadening the range of scenarios they consider plausible. Predictions of the public were even more inaccurate and poorly calibrated, suggesting that an important role remains for expert predictions as long as experts acknowledge their uncertainty.
In this study, we present results from five cross-sectional surveys on public risk perception of COVID-19 and its association with health protective behaviours in the UK over a 10-month period (March 2020 to January 2021). Samples were nationally balanced on age, gender, and ethnicity (total N = 6,281). We find that although risk perception varies between the time points surveyed, it is consistently, significantly, and positively correlated with the reported adoption of protective health behaviours, such as wearing face masks or social distancing. There is also an increase in reported health protective behaviours in the UK between March 2020 and January 2021. The strength of the association between risk perception and behaviour varies by time point, with a stronger relationship in January 2021 compared to March and May 2020. We also assess the stability of the psychological determinants of risk perception over time. People's prosocial tendencies and individualistic worldviews, experience with the virus, trust in government, science, and medical professionals, as well as personal and collective efficacy all emerged as significant predictors. With few exceptions, these predictors remained consistent in their relationship with risk perception over time. Lastly, we find that psychological factors are more predictive of risk perception than an objective measure of situational severity, i.e. the number of confirmed COVID-19 cases at the time of data collection. Implications for risk communication are discussed.
Abstract Objective To derive and validate a risk prediction algorithm to estimate hospital admission and mortality outcomes from coronavirus disease 2019 (covid-19) in adults. Design Population based cohort study. Setting and participants QResearch database, comprising 1205 general practices in England with linkage to covid-19 test results, Hospital Episode Statistics, and death registry data. 6.08 million adults aged 19-100 years were included in the derivation dataset and 2.17 million in the validation dataset. The derivation and first validation cohort period was 24 January 2020 to 30 April 2020. The second temporal validation cohort covered the period 1 May 2020 to 30 June 2020. Main outcome measures The primary outcome was time to death from covid-19, defined as death due to confirmed or suspected covid-19 as per the death certification or death occurring in a person with confirmed severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection in the period 24 January to 30 April 2020. The secondary outcome was time to hospital admission with confirmed SARS-CoV-2 infection. Models were fitted in the derivation cohort to derive risk equations using a range of predictor variables. Performance, including measures of discrimination and calibration, was evaluated in each validation time period. Results 4384 deaths from covid-19 occurred in the derivation cohort during follow-up and 1722 in the first validation cohort period and 621 in the second validation cohort period. The final risk algorithms included age, ethnicity, deprivation, body mass index, and a range of comorbidities. The algorithm had good calibration in the first validation cohort. For deaths from covid-19 in men, it explained 73.1% (95% confidence interval 71.9% to 74.3%) of the variation in time to death (R 2 ); the D statistic was 3.37 (95% confidence interval 3.27 to 3.47), and Harrell’s C was 0.928 (0.919 to 0.938). Similar results were obtained for women, for both outcomes, and in both time periods. In the top 5% of patients with the highest predicted risks of death, the sensitivity for identifying deaths within 97 days was 75.7%. People in the top 20% of predicted risk of death accounted for 94% of all deaths from covid-19. Conclusion The QCOVID population based risk algorithm performed well, showing very high levels of discrimination for deaths and hospital admissions due to covid-19. The absolute risks presented, however, will change over time in line with the prevailing SARS-C0V-2 infection rate and the extent of social distancing measures in place, so they should be interpreted with caution. The model can be recalibrated for different time periods, however, and has the potential to be dynamically updated as the pandemic evolves.
Objectives To develop a new interface for the widely used prognostic breast cancer tool: PREDICT. To facilitate shared decision-making around post-surgery breast cancer treatments. To derive insights for communicating the outputs of prognostic models to patients and their clinicians. Method We applied user-centred design principles in developing a new interface for PREDICT. The research involved online surveys, focus groups, meetings, and usability testing with patients, clinicians and the public. Results The new interface for has been launched and delivers around 30,000 sessions per month. We identified several principles useful when communicating the output of prognostic models. A programme of future work based on patient and clinician feedback has also been developed. One stand-out requirement was the need for quantitative data on the adverse effects of adjuvant breast cancer treatments in order to allow patients to make a balanced decision about whether to have treatments. Conclusions For prognostic algorithms to fulfil their potential to assist with shared decision-making they need carefully designed interfaces. User-centred design puts patients and clinicians needs at the forefront, allowing them to derive the maximum benefit from prognostic models.