Testing the NHS: the tensions between personalized and collective medicine produced by personal genomics in the UK

This study examines direct-to-consumer genetic testing (DTCGT) in the UK using the Social Construction of Technology framework to draw conclusions about how commercial genotyping is being shaped by principal groups involved with the technology. Different tests are available including single nucleotide polymorphism genotyping for ancestry and health information, the latter being the focus of this study. I conducted interviews with DTCGT users, and genetics clinicians who had either been consulted about DTCGT or who were willing to discuss their views. This paper is about one of the study’s three themes, the NHS. DTCGT seemed to provide a point of focus for conflict between personalized and collective medicine in the UK, rather than being its cause. This suggests that DTCGT is more likely to achieve stability by virtue of being superseded by new technologies, rather than by achieving closure

UK users’ and genetics clinicians’ experiences of direct-to-consumer genetic testing

In the last decade personal genomics has been available to the public by direct-to-consumer marketing and sales. Different tests are available including single nucleotide polymorphism (SNP) genotyping. SNP genotyping measures variation in nucleotides at specific points in deoxyribose nucleic acid (DNA) and can be analysed for information about ancestry, physical traits, risk of susceptibility to common complex diseases, genetic disorder carrier status and drug metabolism. SNPs have been analysed in human populations to associate variation with particular traits and common complex diseases, though the association data for disease risk is known to be unreliable. Some claim that direct-to-consumer genetic testing embodies a positive shift from medical hegemony to a market-oriented system while others are apprehensive about the lack of involvement of medical professionals and purchasers’ lack of understanding of probabilistic genetic information. These different views represent the dispute over SNP genotyping sold directly to the public that this study focuses on. My thesis explores this emerging technology using the Social Construction of Technology to investigate the experiences of a group of early adopters of the technology in the UK. I contrast their experiences with those of a group of UK genetic clinicians and examine participants’ respective understandings of SNP genotyping and its possible implications for the NHS. Whilst the data largely mirror the extant literature, they give an insight into the importance of social factors in influencing decision-making in relation to adopting or rejecting new technology. I discuss the data’s common themes of knowledge of genomics, the importance of social networks in understanding and engaging with new technologies, and personal versus collective medicine that characterise both groups’ experiences. To conclude I explore these themes in relation to the concept of biosociality

Pre- and post-consenting environmental surveys.

This presentation outlines the findings of the fourth- and fifth work packages of the RiCORE project, focusing on environmental surveys before and after the consenting process, and applying an adaptive management approach

"A stressful and frightening experience"? : children's nurses' perceived readiness to care for children with cancer following pre-registration nurse education : a qualitative study

Background In the UK children with cancer are cared for by children’s nurses in a variety of settings, specialist and non-specialist. Whilst post-registration specialist education is available to some nurses, many nurses rely solely on pre-registration education to competently care for these children. This study explores whether nurses perceive that this adequately prepares them. Objectives To explore the extent to which qualified nurses perceive that pre-registration nurse education prepares them to care for children with cancer; to consider the implications for children’s nursing pre-registration curricula. Design A small-scale qualitative study was undertaken using an interpretivist approach. Methods Semi-structured interviews were conducted with six qualified children’s nurses in two clinical areas - a specialist children’s cancer inpatient ward, and a general children’s ward where inpatients included children with cancer. Results Findings are discussed in relation to three emergent themes: Learning in Theory and Practice, Care of the Child and Family, and Resilience. Participants attached significance to the quantity and quality of practice experience. They reflected on barriers to specific and transferable theoretical learning and stressed the importance of integrating theory and practice. Understanding of family-centred care formed a significant part of their preparation. Preconceptions, communication with families and the emotional impact of this speciality were stressful. Improved pre-registration preparation may have developed participants’ resilience. Conclusion The complexities of caring for children with cancer and their families require well-prepared nurses. Participants’ perceptions of preparedness were influenced by aspects of pre-registration education. Their experiences suggest that curricula should be practice-focused and include a range of placements. Specialist theoretical content must be integrated with practice and transferability of knowledge and skills made explicit. Reflection and problem-based learning may foster coping mechanisms and resilience that will equip them to care for children with cancer

Frameworks for supporting patient and public involvement in research: Systematic review and co-design pilot.

BACKGROUND: Numerous frameworks for supporting, evaluating and reporting patient and public involvement in research exist. The literature is diverse and theoretically heterogeneous. OBJECTIVES: To identify and synthesize published frameworks, consider whether and how these have been used, and apply design principles to improve usability. SEARCH STRATEGY: Keyword search of six databases; hand search of eight journals; ancestry and snowball search; requests to experts. INCLUSION CRITERIA: Published, systematic approaches (frameworks) designed to support, evaluate or report on patient or public involvement in health-related research. DATA EXTRACTION AND SYNTHESIS: Data were extracted on provenance; collaborators and sponsors; theoretical basis; lay input; intended user(s) and use(s); topics covered; examples of use; critiques; and updates. We used the Canadian Centre for Excellence on Partnerships with Patients and Public (CEPPP) evaluation tool and hermeneutic methodology to grade and synthesize the frameworks. In five co-design workshops, we tested evidence-based resources based on the review findings. RESULTS: Our final data set consisted of 65 frameworks, most of which scored highly on the CEPPP tool. They had different provenances, intended purposes, strengths and limitations. We grouped them into five categories: power-focused; priority-setting; study-focused; report-focused; and partnership-focused. Frameworks were used mainly by the groups who developed them. The empirical component of our study generated a structured format and evidence-based facilitator notes for a "build your own framework" co-design workshop. CONCLUSION: The plethora of frameworks combined with evidence of limited transferability suggests that a single, off-the-shelf framework may be less useful than a menu of evidence-based resources which stakeholders can use to co-design their own frameworks

Pre-consent survey guidance.

This report provides advice for whether or not (and to what extent in terms of data volume) pre-consent surveys are required during the creation of offshore renewable energy projects. This comes as part of the RiCORE project, which aimed to promote the use of offshore renewable energy projects in the EU by streamlining consenting processes

Report on potential emerging innovative monitoring approaches, identifying potential reductions in monitoring costs and evaluation of existing long-term datasets.

This report highlights the potential for using emerging and innovative technologies for pre-consent surveys of key receptor groups at proposed marine renewable energy sites. The report also identifies potential reductions in cost through comparison of currently-used survey methods. This comes as part of the RiCORE project, which aimed to promote the use of offshore renewable energy projects in the EU by streamlining consenting processes

How 'significant others' may support parents with decision-making about their child's cancer care: An integrative literature review

Aim: To synthesise what is known from current international evidence about how parents are supported by significant others when they are faced with making decisions about their child's cancer care. Background: Parents are faced with making challenging decisions when their child has cancer and may benefit from support. Whilst previous research has comprehensively explored how healthcare professionals can offer support, little attention has been given to how support may be informally provided from a parent's network of significant others. Method: An integrative literature review was undertaken and reported following the ENTREQ framework. Literature was identified from comprehensive database searching across four relevant databases (CINAHL, PubMed, PsychINFO and British Nursing Database) and hand-searching reference lists of retrieved studies. Studies that met the inclusion criteria were critically appraised and then analysed using the Constant Comparative Analysis method. Results: Twenty-six articles were included in the review. Two overarching themes were identified. Theme 1— Dimensions of Decision-Making support— included three sub-themes: informational, emotional and instrumental mechanisms of support. Theme 2— Expectations of Decision-Making support— identified that parents’ expectations of their own role, and the role of their significant others, affected how decision-making was supported. Conclusions: Parents may seek and receive support from various significant members of their network, but there is a fine line between supportive and unsupportive behaviours. Relevance to clinical practice: Each family's unique personal, social and cultural context strongly impacts on their support needs, and nurses and other healthcare professionals should be mindful of how parents may access support from their significant others. Further indepth research around this area would contribute important knowledge around parents’ support needs