Andrew Turner

BackgroundEngagement is important within cohort studies for a number of reasons. It is argued that engaging participants within the studies they are involved in may promote their recruitment and retention within the studies. Participant input can also improve study designs, make them more acceptable for uptake by participants and aid in contextualising research communication to participants. Ultimately it is also argued that engagement needs to provide an avenue for participants to feedback to the cohort study and that this is an ethical imperative. This study sought to explore the participants’ experiences and thoughts of their engagement with their birth cohort study.MethodsParticipants were recruited from the Children of the 90s (CO90s) study. Qualitative semi-structured interviews were conducted with 42 participants. The interviews were transcribed verbatim, and uploaded onto Nvivo software. They were then analysed via thematic analysis with a constant comparison technique.ResultsParticipants’ experiences of their engagement with CO90s were broadly based on three aspects: communication they received from CO90s, experiences of ethical conduct from CO90s and receiving rewards from CO90s. The communication received from CO90s, ranged from newsletters explaining study findings and future studies, to more personal forms like annual greeting cards posted to each participant. Ethical conduct from CO90s mainly involved participants understanding that CO90s would keep their information confidential, that it was only involved in ‘good’ ethical research and their expectation that CO90s would always prioritise participant welfare. Some of the gifts participants said they received at CO90s included toys, shopping vouchers, results from clinical tests, and time off from school to attend data collection (Focus) days. Participants also described a temporality in their engagement with CO90s and the subsequent trust they had developed for the cohort study.ConclusionThe experiences of engagement described by participants were theorized as being based on reciprocity which was sometimes overt and other times more nuanced. We further provide empirical evidence of participants’ expectation for a reciprocal interaction with their cohort study while highlighting the trust that such an interaction fosters. Our study therefore provides key insights for other cohort studies on what participants value in their interactions with their cohort studies.

Medicine today, as both art and science, embodies a split personality. The ensuing tension—between individualized consideration, experience, and judgment on the one hand, and standardization, objective evidence, and guidelines on the other—plays out in the simultaneous aspirations of the medical humanities and evidence-based medicine, and in a host of other telling terms and movements. This is not a new tension, however. We turn in this paper to the critical but complex history of the term “personal equation” as both reflective and generative of this tension on both sides of the Atlantic during a formative period in medicine from the mid-19th through the mid-20th centuries. The term was featured in almost every...

Acommon theme in placebo studies is that the terms placebo and "placebo effects" are confusing, misleading, and sloppy, and that there are no agreed definitions. Indeed, many authors treat the conceptual difficulties raised by placebos as a call to action and propose new definitions and reconceptualizations, or even propose abandoning the term altogether. The promise of these approaches is that a new language and new metaphors for thinking about placebo phenomena may deliver clinical, ethical, and methodological advances. However, the nature and impact of these promised advances is rarely...

In 2009, the UK House of Commons Science and Technology Committee conducted an ‘evidence check’ on homeopathy to evaluate evidence for its effectiveness. In common with the wider literature critical of homeopathy, the STC report seems to endorse many of the strong claims that are made about its implausibility. In contrast with the critical literature, however, the STC report explicitly does not place any weight on implausibility in its evaluation. I use the contrasting positions of the STC and the wider critical literature to examine the ‘implausibility arguments’ against homeopathy and the place of such arguments within evidence-based medicine. I argue that the STC report undervalues its strong claims about the mechanistic plausibility of homeopathy because it relies on a misunderstanding about the role of mechanistic evidence within EBM. This is not a conclusion for a revision of the role mechanistic evidence plays within EBM, however. It is a conclusion about the inconsistency of the STC report’s position towards implausibility arguments, given the evidential claims they endorse and the atypical situation that homeopathy presents. It provides a further example of the general point that mechanistic reasoning should not be seen as providing categorically lower quality evidence.

Because no single person or group holds knowledge about all aspects of research, mechanisms are needed to support knowledge exchange and engagement. Expertise in the research setting necessarily includes scientific and methodological expertise, but also expertise gained through the experience of participating in research and/or being a recipient of research outcomes. Engagement is, by its nature, reciprocal and relational: the process of engaging research participants, patients, citizens and others brings them closer to the research but also brings the research closer to them. When translating research into practice, engaging the public and other stakeholders is explicitly intended to make the outcomes of translation relevant to its constituency of users. In practice, engagement faces numerous challenges and is often time-consuming, expensive and ‘thorny’ work. We explore the epistemic and ontological considerations and implications of four common critiques of engagement methodologies that contest: representativeness, communication and articulation, impacts and outcome, and democracy. The ECOUTER methodology addresses problems of representation and epistemic foundationalism using a methodology that asks, “How could it be otherwise?” ECOUTER affords the possibility of engagement where spatial and temporal constraints are present, relying on saturation as a method of ‘keeping open’ the possible considerations that might emerge and including reflexive use of qualitative analytic methods. This paper describes the ECOUTER process, focusing on one worked example and detailing lessons learned from four other pilots. ECOUTER uses mind-mapping techniques to ‘open up’ engagement, iteratively and organically. ECOUTER aims to balance the breadth, accessibility and user-determination of the scope of engagement. An ECOUTER exercise comprises four stages: engagement and knowledge exchange; analysis of mindmap contributions; development of a conceptual schema ; and feedback, refinement and development of recommendations. ECOUTER refuses fixed truths but also refuses a fixed nature. Its promise lies in its flexibility, adaptability and openness. ECOUTER will be formed and re-formed by the needs and creativity of those who use it.

Fracking or the extraction of shale gas through hydraulic fracturing of rock has become a contested topic, especially in the United States, where it has been deployed on a large scale, and in Europe where it is still largely speculative. Research is beginning to investigate the environmental and economic costs and benefits as well as public perceptions of this new energy technology. However, so far the social and psychological impact of fracking on those involved in it, such as gas workers, or those living in the vicinity of fracking sites, has escaped the attention of the social science research community. In this article we begin to fill this gap through a small-scale thematic analysis of representations of fracking in fifty YouTube videos, where the trailer of a controversial film, Gasland (Fox, 2010), has had a marked impact. Results show that the videos discuss not only environmental and economic costs and benefits of fracking but also social and psychological impacts on individuals and communities. These videos reveal a human face of fracking that remains all too often hidden from view.