The nature and ethics of natural experiments

Natural experiments are an important methodology often used to answer research questions that would, otherwise, be impossible to address, or employed because of ethical concerns about the use of randomisation to interventions that carry known risks. The UK Medical Research Council (MRC) recently produced an extremely useful document discussing the nature and significance of natural experiments within medical and public health research. In this paper, however, we suggest that the MRC document's definition of the term ‘natural experiment’ is insufficiently precise. In response, we offer a taxonomy of different types of natural experiments and related methods, and explore the ethical implications of these different types. We argue that while the ethical issues that may arise within natural experiments in relation to risks of harm or informed consent may differ from those within the randomised controlled trial, they are not thereby less pressing. The implications of the argument are explored and recommendations made for those involved in research governance

‘Idle Devils’ and ‘Household Engineers’: Identity in Chronic Widespread Pain

Chronic widespread pain, in which pain is experienced in multiple bodily areas, is estimated to affect between 4.7% and 11.2% of the population but little is known about the experiences of this group of people. Previous research on chronic illness has offered insights into the ways in which sufferers attempt to construct new identities or maintain old ones, which may be relevant to the experience of people with chronic widespread pain. This paper is based on ongoing research which uses in-depth interviews, diaries and family member interviews to explore the experiences of this group of people. The paper uses the accounts of two men and their spouses to explore the ways in which key features of chronic widespread pain may influence identity. For Harry, the invisibility of pain raises possible accusations of ‘idleness’ or malingering, leading to attempts to maintain identity as a worker, despite the uncertainties of a chronic condition. Harry attempts to reduce the impact of his illness on his identity, through presenting himself as part of the wider group of the unemployed, leading to additional tensions. In contrast, Duncan creates a new identity as a ‘household engineer’, demonstrating his physical competence and control over aspects of his condition through performance of household chores. He, and his wife, present his pain onset as a positive opportunity to renegotiate their roles within the family. The accounts of Harry and Duncan provide insight into the experiences of living with chronic widespread pain and the different ways in which lost identities can be recreated

Focus group methodology: Some ethical challenges

Waterfield, Jackie - ORCID 0000-0001-9004-7125 https://orcid.org/0000-0001-9004-7125Previously deposited in Keele University repository on 23 Jul 2019: http://eprints.keele.ac.uk/6585/Focus group methodology generates distinct ethical challenges that do not correspond fully to those raised by one-to-one interviews. This paper explores, in both conceptual and practical terms, three key issues: consent; confidentiality and anonymity; and risk of harm. The principal challenge in obtaining consent lies in giving a clear account of what will take place in the group, owing to unpredictability of the discussion and interaction that will occur. As consent can be seen in terms of creating appropriate expectations in the participant, this may therefore be hard to achieve. Moreover, it is less straightforward for the participant to revoke consent than in one-to-one interviews. Confidentiality and anonymity are potentially problematic because of the researcher’s limited control over what participants may subsequently communicate outside the group. If the group discussion encourages over-disclosure by some participants, this problem becomes more acute. Harm in a focus group may arise from the discussion of sensitive topics, and this may be amplified by the public nature of the discussion. A balance should be struck between avoiding or closing down potentially distressing discussion and silencing the voices of certain participants to whom such discussion may be important or beneficial. As a means of addressing the above issues, we outline some strategies that can be adopted in the consent process, in a preliminary briefing session, during moderation of the focus group, and in a subsequent debriefing, and suggest that these strategies can be employed synergistically so as to reinforce each other.https://doi.org/10.1007/s11135-019-00914-553pubpub

What Determines Inter-Coder Agreement in Manual Annotations? A Meta-Analytic Investigation

Recent discussions of annotator agreement have mostly centered around its calculation and interpretation, and the correct choice of indices. Although these discussions are important, they only consider the "back-end" of the story, namely, what to do once the data are collected. Just as important in our opinion is to know how agreement is reached in the first place and what factors influence coder agreement as part of the annotation process or setting, as this knowledge can provide concrete guidelines for the planning and set-up of annotation projects. To investigate whether there are factors that consistently impact annotator agreement we conducted a meta-analytic investigation of annotation studies reporting agreement percentages. Our meta-analysis synthesized factors reported in 96 annotation studies from three domains (word-sense disambiguation, prosodic transcriptions, and phonetic transcriptions) and was based on a total of 346 agreement indices. Our analysis identified seven factors that influence reported agreement values: annotation domain, number of categories in a coding scheme, number of annotators in a project, whether annotators received training, the intensity of annotator training, the annotation purpose, and the method used for the calculation of percentage agreements. Based on our results we develop practical recommendations for the assessment, interpretation, calculation, and reporting of coder agreement. We also briefly discuss theoretical implications for the concept of annotation quality

A systematic review and meta-analysis of the prevalence of chronic widespread pain in the general population.

Chronic widespread pain (CWP) is common and associated with poor general health. There has been no attempt to derive a robust prevalence estimate of CWP or assess how this is influenced by sociodemographic factors. This study therefore aimed to determine, through a systematic review and meta-analysis, the prevalence of CWP in the adult general population and explore variation in prevalence by age, sex, geographical location, and criteria used to define CWP. MEDLINE, Embase, CINAHL, and AMED were searched using a search strategy combining key words and related database-specific subject terms to identify relevant cohort or cross-sectional studies published since 1990. Included articles were assessed for risk of bias. Prevalence figures for CWP (American College of Rheumatology criteria) were stratified according to geographical location, age, and sex. Potential sources of variation were investigated using subgroup analyses and meta-regression. Twenty-five articles met the eligibility criteria. Estimates for CWP prevalence ranged from 0% to 24%, with most estimates between 10% and 15%. The random-effects pooled prevalence was 10.6% (95% confidence intervals: 8.6-12.9). When only studies at low risk of bias were considered pooled, prevalence increased to 11.8% (95% confidence intervals: 10.3-13.3), with reduced but still high heterogeneity. Prevalence was higher in women and in those aged more than 40 years. There was some limited evidence of geographic variation and cultural differences. One in 10 adults in the general population report chronic widespread pain with possible sociocultural variation. The possibility of cultural differences in pain reporting should be considered in future research and the clinical assessment of painful conditions

Metasynthesis: issues of empirical and theoretical context

Metasynthesis is an approach to synthesizing primary qualitative research, and may take either an aggregative or an interpretive approach. In either case, the resulting synthesis inevitably occurs at a remove from both the empirical and the theoretical contexts of the original research. We argue that seeking to retain these contexts in the synthesis poses specific challenges. Thus, the empirical context of an original study and the individuality of participants’ first-order accounts will be incompletely and selectively represented in a published study, and will be further out of reach at the level of synthesis. Syntheses should therefore be faithful to, but not seek to reproduce, the empirical context of the primary studies. As regards theoretical context, accommodating the concepts and the broader theoretical frameworks of primary studies may require potentially divergent philosophical assumptions to be reconciled with each other and with the theoretical standpoint of the synthesist. Selecting studies where these assumptions are compatible, at the level of both theory and methodology, may lessen this challenge. Some metasyntheses seek to integrate not just concepts but also theories (metatheorizing), but here the challenges of philosophical and theoretical compatibility are more acute, and the means of achieving such integration appear to be underdeveloped

Stroke survivors’ views on their priorities for upper-limb recovery and the availability of therapy services after stroke: a longitudinal, phenomenological study

Forty percent of stroke survivors have a persistent lack of function in the upper limb, causing significant disability. Most personal-care tasks and meaningful activities require bi-manual function of both upper limbs. However, lower-limb mobility is often viewed as the priority in stroke services. Perspectives of stroke survivors on priorities for upper-limb recovery and therapy have not been investigated in detail. Therefore, this study aimed to explore their views

Adrenal lesions found incidentally: how to improve clinical and cost-effectiveness

Introduction Adrenal incidentalomas are lesions that are incidentally identified while scanning for other conditions. While most are benign and hormonally non-functional, around 20% are malignant and/or hormonally active, requiring prompt intervention. Malignant lesions can be aggressive and life-threatening, while hormonally active tumours cause various endocrine disorders, with significant morbidity and mortality. Despite this, management of patients with adrenal incidentalomas is variable, with no robust evidence base. This project aimed to establish more effective and timely management of these patients. Methods We developed a web-based, electronic Adrenal Incidentaloma Management System (eAIMS), which incorporated the evidence-based and National Health Service–aligned 2016 European guidelines. The system captures key clinical, biochemical and radiological information necessary for adrenal incidentaloma patient management and generates a pre-populated outcome letter, saving clinical and administrative time while ensuring timely management plans with enhanced safety. Furthermore, we developed a prioritisation strategy, with members of the multidisciplinary team, which prioritised high-risk individuals for detailed discussion and management. Patient focus groups informed process-mapping and multidisciplinary team process re-design and patient information leaflet development. The project was partnered by University Hospital of South Manchester to maximise generalisability. Results Implementation of eAIMS, along with improvements in the prioritisation strategy, resulted in a 49% reduction in staff hands-on time, as well as a 78% reduction in the time from adrenal incidentaloma identification to multidisciplinary team decision. A health economic analysis identified a 28% reduction in costs. Conclusions The system’s in-built data validation and the automatic generation of the multidisciplinary team outcome letter improved patient safety through a reduction in transcription errors. We are currently developing the next stage of the programme to proactively identify all new adrenal incidentaloma cases