Patient and Public Involvement in the Design of Clinical Trials: An Overview of Systematic Reviews

Background Funders encourage lay-volunteer inclusion in research but this is not without controversy or resistance, given concerns of role confusion, exploratory methods and limited evidence about what value this brings to research. This overview explores these elements. Methods Eleven databases and gray literature were searched without date or language restrictions for systematic reviews of public involvement in clinical trials design. This systematic overview of patient and public involvement (PPI) included 27 reviews from which areas of good and bad practice were identified. PPI strengths, weaknesses, opportunities and threats were explored through use of meta-narrative analysis. Results Inclusion criteria was met by 27 reviews. Confidence in the findings was assessed using Cerqual, Nice-H, CASP for qualitative research and CASP systematic reviews. Quality ranged from high (n=7), medium (n=14) to low (n=6) in the reviews. Four reviews report the risk of bias. Public involvement roles were primarily in agenda setting, steering committees, ethical review, protocol development, and piloting. Research summaries, follow-up, and dissemination contained PPI, with lesser involvement in data collection, analysis, or manuscript authoring. Trialists report difficulty in finding, retaining, and reimbursing volunteers. Respectful inclusion, role recognition, mutual flexibility, advance planning and sound methods were reported as facilitating public involvement in research. Public involvement was reported to have increased the quantity and quality of patient relevant priorities and outcomes, enrollment, funding, design, implementation and dissemination. Challenges identified include lack of clarity within common language, roles and research boundaries; while logistical needs include extra time, training and funding, Researchers report struggling to report involvement and avoid tokenism. Conclusions Involving patients and the public in clinical trials design, can be beneficial but requires resources, preparation, training, flexibility and time. Issues to address include reporting deficits in the areas of risk of bias, study quality and conflicts of interests. There is a need for improved dissemination strategies to increase public involvement and health literacy. Improvements in funding, training, and reporting of PPI are needed to facilitate meaningful and effective PPI

Evidence accumulation models with R: A practical guide to hierarchical Bayesian methods

Evidence accumulation models are a useful tool to allow researchers to investigate the latent cognitive variables that underlie response time and response accuracy. However, applying evidence accumulation models can be difficult because they lack easily computable forms. Numerical methods are required to determine the parameters of evidence accumulation that best correspond to the fitted data. When applied to complex cognitive models, such numerical methods can require substantial computational power which can lead to infeasibly long compute times. In this paper, we provide efficient, practical software and a step-by-step guide to fit evidence accumulation models with Bayesian methods. The software, written in C++, is provided in an R package: 'ggdmc'. The software incorporates three important ingredients of Bayesian computation, (1) the likelihood functions of two common response time models, (2) the Markov chain Monte Carlo (MCMC) algorithm (3) a population-based MCMC sampling method. The software has gone through stringent checks to be hosted on the Comprehensive R Archive Network (CRAN) and is free to download. We illustrate its basic use and an example of fitting complex hierarchical Wiener diffusion models to four shooting-decision data sets

The domestic and gendered context for retirement

Against a global backdrop of population and workforce ageing, successive UK governments have encouraged people to work longer and delay retirement. Debates focus mainly on factors affecting individuals’ decisions on when and how to retire. We argue that a fuller understanding of retirement can be achieved by recognizing the ways in which individuals’ expectations and behaviours reflect a complicated, dynamic set of interactions between domestic environments and gender roles, often established over a long time period, and more temporally proximate factors. Using a qualitative data set, we explore how the timing, nature and meaning of retirement and retirement planning are played out in specific domestic contexts. We conclude that future research and policies surrounding retirement need to: focus on the household, not the individual; consider retirement as an often messy and disrupted process and not a discrete event; and understand that retirement may mean very different things for women and for men

Examining the feasibility of mixture risk assessment: A case study using a tiered approach with data of 67 pesticides from the Joint FAO/WHO Meeting on Pesticide Residues (JMPR)

The way in which mixture risk assessment (MRA) should be included in chemical risk assessment is a current topic of debate. We used data from 67 recent pesticide evaluations to build a case study using Hazard Index calculations to form risk estimates in a tiered MRA approach in line with a Framework proposed by WHO/IPCS. The case study is used to illustrate the approach and to add detail to the existing Framework, and includes many more chemicals than previous case studies.A low-tier MRA identified risk as being greater than acceptable, but refining risk estimates in higher tiers was not possible due to data requirements not being readily met. Our analysis identifies data requirements, which typically expand dramatically in higher tiers, as being the likely cause for an MRA to fail in many realistic cases. This forms a major obstacle to routine implementation of MRA and shows the need for systematic generation and collection of toxicological data. In low tiers, hazard quotient inspection identifies chemicals that contribute most to the HI value and thus require attention if further refinement is needed. Implementing MRA requires consensus on issues such as scope setting, criteria for performing refinement, and decision criteria for actions.Oak Foundation (Grant number OCAY-13-391), which is gratefully acknowledged, and partly in the context of an European Food Safety Authority contract (CFT/EFSA/PPR/2010/04

What utility scores do mental health service users, healthcare professionals and members of the general public attribute to different health states? A co-produced mixed methods online survey

Utility scores are integral to health economics decision-making. Typically, utility scores have not been scored or developed with mental health service users. The aims of this study were to i) collaborate with service users to develop descriptions of five mental health states (psychosis, depression, eating disorder, medication side effects and self-harm); ii) explore feasibility and acceptability of using scenario-based health states in an e-survey; iii) evaluate which utility measures (standard gamble (SG), time trade off (TTO) and rating scale (RS)) are preferred; and iv) determine how different participant groups discriminate between the health scenarios and rank them

Validity and worth in the science curriculum: learning school science outside the laboratory

It is widely acknowledged that there are problems with school science in many developed countries of the world. Such problems manifest themselves in a progressive decline in pupil enthusiasm for school science across the secondary age range and the fact that fewer students are choosing to study the physical sciences at higher levels and as careers. Responses to these developments have included proposals to reform the curriculum, pedagogy and the nature of pupil discussion in science lessons. We support such changes but argue from a consideration of the aims of science education that secondary school science is too rooted in the science laboratory; substantially greater use needs to be made of out-of-school sites for the teaching of science. Such usage should result in a school science education that is more valid and more motivating and is better at fulfilling defensible aims of school science education. Our contention is that laboratory-based school science teaching needs to be complemented by out-of-school science learning that draws on the actual world (e.g. through fieldtrips), the presented world (e.g. in science centres, botanic gardens, zoos and science museums) and the virtual worlds that are increasingly available through information and communications technologies (ICT)

The New Counter-Terrorism and Countering Violent Extremism: Speech Regulation, Private Companies and Free Expression

Panel discussion on counter-terrorism and violent extremism.https://larc.cardozo.yu.edu/flyers-2017-2018/1041/thumbnail.jp

Collaboration between academics and teachers : a complex relationship

Collaboration between academics and teachers has become increasingly prevalent over recent years. Whether its aim is joint research or continuing professional development for teachers, collaboration seems to offer a realistic opportunity for reducing the perceived gap between theory and practice. However, collaboration is not merely academics and teachers working together on a common project. It is complex in nature and involves a range of requirements that must be satisfied in order to maximise the potential of the relationship. In this paper we will theorise on the nature of academics and teachers working together and suggest that a working relationship between academic researchers and teachers can be one of three models: client–supplier, a coercive relationship or a collaborative relationship. We identify and unpack specific factors that underpin collaboration and suggest a number of concrete actions to establish collaboration between academics and teachers. We draw heavily from existing literature and our own reflections on two collaborative projects with which we have recently been involved. We use data from these projects to provide a number of anecdotes from the teachers who participated to support our own reflections. Finally, we suggest that further research should investigate the different ways attempts to collaborate fail, to build a more complete sense of the problems and potential of this special relationship. Keywords: collaboration; continuing professional development; action research; science teacher

A Method to Estimate the Chronic Health Impact of Air Pollutants in U.S. Residences

Background: Indoor air pollutants (IAPs) cause multiple health impacts. Prioritizing mitigation options that differentially affect individual pollutants and comparing IAPs with other environmental health hazards require a common metric of harm