Genome sequencing has been rapidly integrated into clinical research and is currently marketed to health-care practitioners and consumers alike. The volume of sequencing data generated for a single individual and the wide range of findings from wholegenome sequencing raise critical questions about the return of results and their potential value for end-users. We conducted a mixed-methods study of 311 sequential participants in the NIH ClinSeq study to assess general preferences and specific attitudes toward learning results. We tested how these variables predicted intentions to receive results within four categories of findings ranging from medically actionable to variants of unknown significance. Two hundred and ninety-four participants indicated a preference to learn their genome sequencing results. Most often, participants cited disease prevention as their reason, including intention to change their lifestyle behaviors. Participants held positive attitudes, strongly perceived social norms and strong intentions to learn results, although there were significant mean differences among four categories of findings (Po0.01). Attitudes and social norms for medically actionable and carrier results were most similar and rated the highest. Participants distinguished among the types and quality of information they may receive, despite strong intentions to learn all results presented. These intentions were motivated by confidence in their ability to use the information to prevent future disease and a belief in the value of even uninterpretable information. It behooves investigators to facilitate participants' desire to learn a range of information from genomic sequencing while promoting realistic expectations for its clinical and personal utility.

Increasing availability of individual genomic information suggests that patients will need knowledge about genome sequencing to make informed decisions, but prior research is limited. In this study, we examined genome sequencing knowledge before and after informed consent among 311 participants enrolled in the ClinSeq™ sequencing study. An exploratory factor analysis of knowledge items yielded two factors (sequencing limitations knowledge; sequencing benefits knowledge). In multivariable analysis, high pre-consent sequencing limitations knowledge scores were significantly related to education (OR: 8.7, 95% CI: 2.45, 31.10 for postgraduate education and OR: 3.9; 95% CI: 1.05, 14.61 for college degree compared to less than college degree) and race/ethnicity (OR: 2.4, 95% CI: 1.09, 5.38 for non-Hispanic whites compared to other racial/ethnic groups). Mean values increased significantly between pre- and post-consent for the sequencing limitations knowledge subscale (6.9 to 7.7, p<0.0001) and sequencing benefits knowledge subscale (7.0 to 7.5, p<0.0001); increase in knowledge did not differ by sociodemographic characteristics. This study highlights gaps in genome sequencing knowledge, and underscores the need to target educational efforts toward participants with less education or from minority racial/ethnic groups. The informed consent process improved genome sequencing knowledge. Future studies could examine how genome sequencing knowledge influences informed decision making.

Numerous social, economic and academic pressures can have a negative impact on representations of biomedical research. We review several of the forces playing an increasingly pernicious role in how health and science information is interpreted, shared and used, drawing discussions towards the role of narrative. In turn, we explore how aspects of narrative are used in different social contexts and communication environments, and present creative responses that may help counter the negative trends. As traditional methods of communication have in many ways failed the public, changes in approach are required, including the creative use of narratives.

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Complexities in food supply chains were highlighted by the so called ‘horsegate’ crisis in 2013, where beef meat was fraudulently adulterated with horse meat causing widespread recalls and subsequent investigations across both retail and food service markets in the European Union (EU). The beef supply chain is a complex supply chain, with global (EU and Non EU) sourcing strategies in order to secure supply. However, managing these complex supply chains can be difficult and consequentially can expose vulnerabilities similar to that of horsemeat, where horsemeat was found in beef meat within EU supply chains. Six months after the crisis broke, an independent review into the integrity and assurance of food supply networks was commissioned by the UK government and undertaken by Professor Chris Elliott of Queen’s University, Belfast. The review recommended eight pillars of food integrity to industry and government: consumers first, zero tolerance, intelligence gathering, laboratory services, audit, government support, leadership and crisis management. This article examines the extent to which these recommendations have been implemented using personal communications from Professor Chris Elliott and relevant industry bodies. Following the review, industry attitudes have changed substantially, testing and surveillance systems have been integrated into normal industry practice and the government is more prepared for future incidents through the establishment of the National Food Crime Unit (NFCU). Horsegate raised the profile of food fraud and crime in supply chains and despite improvements to date, further collaboration between industry and government is required in order to align fully with the recommendations.

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Background Stories can be a powerful tool to increase uptake of health information, a key goal of knowledge translation (KT). Systematic reviews demonstrate that storytelling (i.e. sharing stories) can be effective in changing health-promoting behaviours. Though an attractive KT strategy, storytelling is a complex approach requiring careful planning and consideration of multiple factors. We sought to develop a framework to assist KT researchers and practitioners in health contexts to consider and develop effective KT interventions that include stories or storytelling. Methods We conducted a broad search of the literature to identify studies that used storytelling as a KT intervention across different disciplines: health research, education, policy development, anthropology, organizational development, technology research, and media. We extracted purposes, theories, models, mechanisms, and outcomes and then mapped the theoretical and practical considerations from the literature onto the Medical Research Council guidance for complex interventions. The theoretical and practical considerations uncovered comprised the basis of the storytelling framework development. Through discussion and consensus, methodological experts refined and revised the framework for completeness, accuracy, nuance, and usability. Results We used a complex intervention lens paired with existing behaviour change techniques to guide appropriate theory-based intervention planning and practical choices. An intentional approach to the development of story-based KT interventions should involve three phases. The theory phase specifies the goal of the intervention, mechanisms of action, and behaviour change techniques that will achieve the intended effects. The modelling phase involves development and testing using an iterative approach, multiple methods and engagement of end-users. Finally, formal evaluation using multiple methods helps determine whether the intervention is having its intended effects and value added. Conclusions This framework provides practical guidance for designing story-based KT interventions. The framework was designed to make explicit the requisite considerations when determining the appropriateness and/or feasibility of storytelling KT, clarify intervention goals and audience, and subsequently, support the development and testing of storytelling interventions. The framework presents considerations as opposed to being prescriptive. The framework also offers an opportunity to further develop theory and the KT community’s understanding of effectiveness and mechanisms of action in storytelling interventions.

Background Research shows a significant gap between healthcare research and evidence-based healthcare policy and practice. Knowledge translation (KT) has an important role in addressing this gap by bolstering evidence-informed healthcare. Canada’s Strategy for Patient-Oriented Research (SPOR) is a nationally mandated and supported initiative developed to respond to the gap between research and practice. One aspect of SPOR is the provincial/territorial SUpport for People and Patient-Oriented Research and Trials (SUPPORT) Units, intended to assist local health researchers and systems to reach the goal of improving the quality and quantity of patient-oriented research in Canada. This article presents the programme theory development and a formative evaluation of the KT Platform in Alberta’s SPOR SUPPORT Unit. Methods We used a mixed-methods approach to develop the KT Platform’s programme theory and subsequently conducted the formative evaluation. An extensive needs assessment, comprised of 59 qualitative interviews with researchers and health systems employees in Canada with an interest in KT, served as the basis for our programme theory design. Three years after launching the KT Platform, we hired an evaluation consultant to conduct a formative evaluation of the Platform’s programme theory and operations. The evaluation was performed by conducting nine interviews with KT Platform service users ( n = 6) and KT experts acting in advisory capacities to the KT Platform ( n = 3). Results The KT Platform developed a ‘4C Model’ as a summary of the Platform’s programme theory. This model is designed to meet local needs for capacity-building, a community of practice, consultation services, and contributions to KT science. This suite of services was found to help the local health system implement health evidence with measurable positive health outcomes. However, the community remains hesitant about their capacity as individuals to design and perform important KT activities independently. Conclusions With the mandate and support provided by SPOR, the KT Platform was able to design a strong programme theory based on evidence from an extensive needs assessment of the local community. The resulting 4C Model has provided a framework for KT work to assist in improving local health outcomes and can be considered by others designing KT programmes as a useful model to follow. Ongoing monitoring and assessment are required to continue to identify and respond to local needs.