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 This suggests that DTCGT is more likely to achieve stability by virtue of being superseded by new technologies, rather than by achieving closure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

Desperately seeking intersectionality in digital health disparity research: narrative review to inform a richer theorization of multiple disadvantage.

Background: Digital consultations between patients and clinicians increased markedly during the COVID-19 pandemic, raising questions about equity. Objective: This study aimed to review the literature on how multiple disadvantage—specifically, older age, lower socioeconomic status, and limited English proficiency—has been conceptualized, theorized, and studied empirically in relation to digital consultations. We focused mainly on video consultations as they have wider disparities than telephone consultations and relevant data on e-consultations are sparse. Methods: Using keyword and snowball searching, we identified relevant papers published between 2012 and 2022 using Ovid MEDLINE, Web of Science, Google Scholar, and PubMed. The first search was completed in July 2022. Papers meeting the inclusion criteria were analyzed thematically and summarized, and their key findings were tabulated using the Grading of Recommendations Assessment, Development, and Evaluation Confidence in the Evidence from Reviews of Qualitative Research criteria. Explanations for digital disparities were critically examined, and a search was undertaken in October 2022 to identify theoretical lenses on multiple disadvantage. Results: Of 663 articles from the initial search, 27 (4.1%) met our inclusion criteria. In total, 37% (10/27) were commentaries, and 63% (17/27) were peer-reviewed empirical studies (11/27, 41% quantitative; 5/27, 19% qualitative; 1/27, 4% mixed methods; 1/27, 4% systematic reviews; and 1/27, 4% narrative reviews). Empirical studies were mostly small, rapidly conducted, and briefly reported. Most studies (25/27, 93%) identified marked digital disparities but lacked a strong theoretical lens. Proposed solutions focused on identifying and removing barriers, but the authors generally overlooked the pervasive impact of multiple layers of disadvantage. The data set included no theoretically informed studies that examined how different dimensions of disadvantage combined to affect digital health disparities. In our subsequent search, we identified 3 theoretical approaches that might help account for these digital disparities. Fundamental cause theory by Link and Phelan addresses why the association between socioeconomic status and health is pervasive and persists over time. Digital capital theory by Ragnedda and Ruiu explains how people mobilize resources to participate in digitally mediated activities and services. Intersectionality theory by Crenshaw states that systems of oppression are inherently bound together, creating singular social experiences for people who bear the force of multiple adverse social structures. Conclusions: A limitation of our initial sample was the sparse and undertheorized nature of the primary literature. The lack of attention to how digital health disparities emerge and play out both within and across categories of disadvantage means that solutions proposed to date may be oversimplistic and insufficient. Theories of multiple disadvantage have bearing on digital health, and there may be others of relevance besides those discussed in this paper. We call for greater interdisciplinary dialogue between theoretical research on multiple disadvantage and empirical studies on digital health disparities

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

Safety implications of remote assessments for suspected COVID-19: qualitative study in UK primary care

Background: The introduction of remote triage and assessment early in the pandemic raised questions about patient safety. We sought to capture patients and clinicians’ experiences of the management of suspected acute COVID-19 and generate wider lessons to inform safer care. Setting and sample: UK primary healthcare. A subset of relevant data was drawn from five linked in-pandemic qualitative studies. The data set, on a total of 87 participants recruited via social media, patient groups and snowballing, comprised free text excerpts from narrative interviews (10 survivors of acute COVID-19), online focus groups (20 patients and 30 clinicians), contributions to a Delphi panel (12 clinicians) and fieldnotes from an online workshop (15 patients, clinicians and stakeholders). Methods: Data were uploaded onto NVivo. Coding was initially deductive and informed by WHO and Institute of Medicine frameworks of quality and safety. Further inductive analysis refined our theorisation using a wider range of theories—including those of risk, resilience, crisis management and social justice. Results: In the early weeks of the pandemic, patient safety was compromised by the driving logic of ‘stay home’ and ‘protect the NHS’, in which both patients and clinicians were encouraged to act in a way that helped reduce pressure on an overloaded system facing a novel pathogen with insufficient staff, tools, processes and systems. Furthermore, patients and clinicians observed a shift to a more transactional approach characterised by overuse of algorithms and decision support tools, limited empathy and lack of holistic assessment. Conclusion: Lessons from the pandemic suggest three key strategies are needed to prevent avoidable deaths and inequalities in the next crisis: (1) strengthen system resilience (including improved resourcing and staffing; support of new tools and processes; and recognising primary care’s role as the ‘risk sink’ of the healthcare system); (2) develop evidence-based triage and scoring systems; and (3) address social vulnerability

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