Delivering research impact that is aligned to social priorities requires public participation throughout the process

The notion that increased public participation is a key component of research impact has developed and gained traction. Indeed, recent analysis has shown that public and user participation does play a key role in delivering impact. However, how does this participation work in practice? Steven Hill, Elizabeth Morrow and Fiona Ross note that the majority of public engagement focuses on the dissemination of findings. Consultation and collaboration remain uncommon, with public participation rarely extending to the framing and development of research questions. Such narrow use of participation risks missing opportunities to align impact more closely with social priorities

Sexual dimorphism in the Drosophila melanogaster (Diptera: Drosophilidae) metabolome increases throughout development

The expression of sexually dimorphic phenotypes from a shared genome between males and females is a longstanding puzzle in evolutionary biology. Increasingly, research has made use of transcriptomic technology to examine the molecular basis of sexual dimorphism through gene expression studies, but even this level of detail misses the metabolic processes that ultimately link gene expression with the whole organism phenotype. We use metabolic profiling in Drosophila melanogaster to complete this missing step, with a view to examining variation in male and female metabolic profiles, or metabolomes, throughout development. We show that the metabolome varies considerably throughout larval, pupal and adult stages. We also find significant sexual dimorphism in the metabolome, although only in pupae and adults, and the extent of dimorphism increases throughout development. We compare this to transcriptomic data from the same population and find that the general pattern of increasing sex differences throughout development is mirrored in RNA expression. We discuss our results in terms of the usefulness of metabolic profiling in linking genotype and phenotype to more fully understand the basis of sexually dimorphic phenotypes

Detecting differential gene expression in blastocysts following pronuclear transfer.

Nuclear transfer techniques (a.k.a. mitochondrial replacement therapies) are currently under development to provide a route to eliminating particular instances of mitochondrial disease from the germline. Before these kinds of techniques are implemented clinically it is of primary concern that their safety and efficacy is established. In a recent paper, Hyslop et al. (Nature 534:383-386, 2016. doi: 10.1038/nature18303 ) utilized a specific version of pronuclear transfer to investigate the consequences for gene expression in the developing embryo, which may indicate whether or not developmental pathways have been perturbed. However, the study was only able to include a small number of blastocysts within each treatment group, although a larger number of single cell expression profiles from each blastocyst were acquired. Using simulated datasets we show that the size and experimental design of this study cannot provide conclusive evidence that expression profiles of manipulated or control samples are indistinguishable from one another due to low power. These simulations also illustrate why visual inspections of principle component analyses used in the study cannot replace statistical modeling of treatment effects

Recruiting and consenting into a peripartum trial in an emergency setting: a qualitative study of the experiences and views of women and healthcare professionals.

BACKGROUND: Recruiting and consenting women to peripartum trials can be challenging as the women concerned may be anxious, in pain, and exhausted; there may also be limited time for discussion and decision-making to occur. To address these potential difficulties, we undertook a qualitative evaluation of the internal pilot of a trial (Got-it) involving women who had a retained placenta (RP). We explored the experiences and views of women and staff about the information and consent pathway used within the pilot, in order to provide recommendations for use in future peripartum trials involving recruitment in emergency situations. METHODS: In-depth interviews were undertaken with staff (n = 27) and participating women (n = 22). Interviews were analysed thematically. The accounts of women and staff were compared to identify differences and similarities in their views about recruitment and consent procedures. RESULTS: Women and staff regarded recruitment as having been straightforward and facilitated by the use of simplified (verbal and written) summaries of trial information. Both parties, however, conveyed discordant views about whether fully informed consent had been obtained. These differences in perspectives appeared to arise from the different factors and considerations impinging on women and staff at the time of recruitment. While staff placed emphasis on promoting understanding in the emergency situation of RP by imparting information in clear and succinct ways, women highlighted the experiential realities of their pre- and post-birthing situations, and how these had led to quick decisions being made without full engagement with the potential risks of trial participation. To facilitate informed consent, women suggested that trial information should be given during the antenatal period, and, in doing so, articulated a rights-based discourse. Staff, however, voiced opposition to this approach by emphasising a duty of care to all pregnant women, and raising concerns about causing undue distress to the majority of individuals who would not subsequently develop a RP. CONCLUSIONS: By drawing upon the perspectives of women and staff involved in the same trial we have shown that they may operate within different experiential and ethical paradigms. In doing so, we argue for the potential benefits of drawing upon multiple perspectives when developing information and consent pathways used in future (peripartum) trials. TRIAL REGISTRATION: ISCRTN 88609453

A qualitative study for co-designing the future of technology to support physical activity for adolescents living with type 1 diabetes

Aim: The aims of this study were to (i) understand what adolescents (and their parents) identify as positive and negative experiences with technology for engaging in physical activity (PA) when living with type 1 diabetes (T1D) and (ii) identify possible future design considerations for supporting or enabling technologies for this population. Methods: Nine online collaborative workshops (n = 25 people) were held over a month with participants who were either adolescents attending with (n = 22) or without (n = 3, aged 16 and over) parents. Each workshop involved (1) a training activity, (2) a design task involving describing a good day vs. a bad day, and (3) a design task asking people to consider future design changes for technology to support them in engaging with physical activity. Results: The following key themes emerged from the first design task: (1) Wearable factors; (2) Social acceptance & identity; (3) Negative emotions; (4) Glycaemic stability offers positive emotions and PA Enjoyment; and (5) Presence, preparation & prevention. The second design task identified the following additional key themes: (6) Improve attachment experiences; (7) Connected devices reduce user burden; (8) Improve accuracy; (9) Personalisation of devices; (10) Funding and policy changes – health equity. Conclusion: Technology can reduce the burden and improve PA support, but there are still gaps in how these technologies can be better designed to consider the psychosocial and emotional factors of both adolescents and their parents as co-users

Letting the world see through your eyes : using photovoice to explore the role of technology in physical activity for adolescents living with type 1 diabetes

This paper qualitatively explores how technologies and physical activity are experienced by adolescents with type 1 diabetes. Type 1 diabetes is a life-threatening autoimmune condition, which is highly prevalent in young children. Physical activity is underutilised as part of treatment goals due to multifactorial challenges and lack of education in both the family setting and across society as a whole. Using photovoice methodology, 29 participants (parents and adolescents), individually or as dyads, shared and described in reflective journal format examples of technology and physical activity in their lives. In total, 120 personal photographs with accompanying narratives were provided. The data were thematically coded by the researcher and then collaboratively with participants. Four key themes (and 12 subthemes) were generated including: (i) benefits of technology; (ii) complexity and difficulty; (iii) emotional impact; (iv) reliance and risk. Findings demonstrate that current technology does not address the complex needs of adolescents with type 1 diabetes to enable participation in physical activity without life risk. We conclude from our findings that future technologies for supporting engagement in physical activity as part of diabetes management need to be: more interoperable, personalised and integrated better with ongoing education and support

Fibrinogen Replacement Therapy for Traumatic Coagulopathy : Does the Fibrinogen Source Matter?

Funding: This work was supported by an NIHR programme grant for applied research; PGfAR01590; “Traumatic coagulopathy and massive transfusion: improving outcomes and saving blood”.Peer reviewedPublisher PD