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This article aims to deepen and broaden our US- and UK-centric theories and histories of late 20th-century penal transformation. Using oral history interviews with civil servants, archival research and analysis of published documents, this article investigates Ireland’s delayed progressive penal transformation in the 1970s. It challenges the dominant narrative that Irish penal policy was stagnant or merely pragmatic during this period and provides cultural, social and political explanations for Ireland’s changing penal culture. These findings also show the limitations of penal welfarism for sufficiently capturing the character of Ireland’s progressive penal ideas and intentions. The article outlines the concept of pastoral penality as an alternative kind of progressive penal politics. Pastoral penality focuses on the problems of the prison, rather than the problems of the prisoner, who is not viewed as inherently criminal and in need of treatment. Instead they require support in coping with the harms of imprisonment.

In November 2017, the American Heart Association published updates to its adult and pediatric Basic Life Support and Cardiopulmonary Resuscitation guidelines; one year later, it published updates to its Advanced Cardiovascular Life Support and Pediatric Advanced Life Support guidelines. This article reviews these updated guidelines and highlights the key changes and how to integrate them into practice.

Researchers are increasingly encouraged to co-produce research, involving members of the public, service users, policy makers and practitioners in more equal relationships throughout a research project. The sharing of power is often highlighted as a key principle when co-producing research. However, health and social care research, as with many other academic disciplines, is carried out within embedded hierarchies and structural inequalities in universities, public service institutions, and research funding systems—as well as in society more broadly. This poses significant challenges to ambitions for co-production. This article explores the difficulties that are faced when trying to put ideal co-production principles into practice. A reflective account is provided of an interdisciplinary project that aimed to better understand how to reduce power differentials within co-produced research. The project facilitated five workshops, involving researchers from different disciplines, health, social care and community development staff and public contributors, who all had experience in co-production within research. In the workshops, people discussed how they had attempted to enable more equal relationships and shared ideas that supported more effective and equitable co-produced research. Shared interdisciplinary learning helped the project team to iteratively develop a training course, a map of resources and reflective questions to support co-produced research. The gap between co-production principles and practice is challenging. The article examines the constraints that exist when trying to share power, informed by multidisciplinary theories of power. To bring co-production principles into practice, changes are needed within research practices, cultures and structures; in understandings of what knowledge is and how different forms of knowledge are valued. The article outlines challenges and tensions when co-producing research and describes potential ideas and resources that may help to put co-production principles into practice. We highlight that trying to maintain all principles of co-production within the real-world of structural inequalities and uneven distribution of resources is a constant challenge, often remaining for now in the realm of aspiration.

Prezentacija daje pregled dosadašnjih rezultata istraživanja u području zdravstvene pismenosti i čitkosti pisanih materijala za pacijente, uz osvrt na zakonske regulative i etičke smjernice za kvalitetnu zdravstvenu komunikaciju.

Background When designing a logo for the Nepal Injury Research Centre a predicament arose: there is no direct Nepali translation for the word ‘injury’. A ‘loan-word’ was used, but this highlighted a broader issue – what do different stakeholders in Nepal understand when we talk about injuries, and what implications might this have for engaging them in research/intervention? Methods To ground our exploration of this topic meaningfully for different stakeholders, we iteratively refined our research design. Experts in injury prevention/occupational health/sociology prepared a proposal, shared through consultation in academic circles. Feedback informed design of an engagement-workshop in December 2019, involving 36 participants from anthropology/sociology/social-work/development-work and health backgrounds. Outputs informed design of the next stage, which is ongoing. Results Professional backgrounds influenced concepts of injury that emerged; where sociologists highlighted the role of social structures, health professionals referenced disruption of ‘health’ as defined by WHO. In addition to physical harms, participants mentioned economic, social/cultural, mental/psychological and spiritual harms. Groups defined injury-types differently, and categorized/grouped these in diverse ways–not all perspectives aligned with WHO International Classification of diseases. Conclusion Multi-dimensional concepts of injury have implications for how we engage with policy-makers on prevention, and design of interventions to mitigate harm. Varied concepts of injury could inform epidemiological survey design, to elicit injuries which might not otherwise be reported. Learning Outcomes Exploring our research field from first principles can help surface our underlying assumptions, as well as sensitizing researchers to the need to identify/engage with meanings important to stakeholders we seek to influence.

Background:Ethical issues arise daily in the delivery of palliative care. Despite much (largely theoretical) literature, evidence from specialist palliative care practitioners about day-to-day ethical challenges has not previously been synthesised. This evidence is crucial to inform education and adequately support staff.Aim:To synthesise the evidence regarding the ethical challenges which specialist palliative care practitioners encounter during clinical practice.Design:Systematic review with narrative synthesis (PROSPERO registration CRD42018105365). Quality was dual-assessed using the Mixed-Methods Appraisal Tool. Tabulation, textural description, concept mapping and thematic synthesis were used to develop and present the narrative.Data sources:Seven databases (MEDLINE, Philosopher’s Index, EMBASE, PsycINFO, LILACS, Web of Science and CINAHL) were searched from inception to December 2019 without language limits. Eligible papers reported original research using inductive methods to describe practitioner-reported ethical challenges.Results:A total of 8074 records were screened. Thirteen studies from nine countries were included. Challenges were organised into six themes: application of ethical principles; delivering clinical care; working with families; engaging with institutional structures and values; navigating societal values and expectations; philosophy of palliative care. Challenges related to specific scenarios/contexts rather than the application of general ethical principles, and occurred at all levels (bedside, institution, society, policy).Conclusion:Palliative care practitioners encounter a broad range of contextual ethical challenges, many of which are not represented in palliative care ethics training resources, for example, navigating institutional policies, resource allocation and inter-professional conflict. Findings have implications for supporting ethical practice and training practitioners. The lack of low- and middle- income country data needs addressing.

Pharmacogenomics holds the promise of personalized drug efficacy optimization and drug toxicity minimization. Much of the research conducted to date, however, suffers from an ascertainment bias towards European participants. Here, we leverage publicly available, whole genome sequencing data collected from global populations, evolutionary characteristics, and annotated protein features to construct a new in silico machine learning pharmacogenetic identification method called XGB-PGX. When applied to pharmacogenetic data, XGB-PGX outperformed all existing prediction methods and identified over 2000 new pharmacogenetic variants. While there are modest pharmacogenetic allele frequency distribution differences across global population samples, the most striking distinction is between the relatively rare putatively neutral pharmacogene variants and the relatively common established and newly predicted functional pharamacogenetic variants. Our findings therefore support a focus on individual patient pharmacogenetic testing rather than on clinical presumptions about patient race, ethnicity, or ancestral geographic residence. We further encourage more attention be given to the impact of common variation on drug response and propose a new ‘common treatment, common variant’ perspective for pharmacogenetic prediction that is distinct from the types of variation that underlie complex and Mendelian disease. XGB-PGX has identified many new pharmacovariants that are present across all global communities, however, communities that have been underrepresented in genomic research are likely to benefit the most from XGB-PGX’s in silico predictions.

Background The opioid use disorder and overdose crisis in the United States affects public health as well as social and economic welfare. While several genetic and non-genetic risk factors for opioid use disorder have been identified, many of the genetic associations have not been independently replicated, and it is not well understood how these factors interact. This study is designed to evaluate relationships among these factors prospectively to develop future interventions to help prevent or treat opioid use disorder. Methods The Genomics of Opioid Addiction Longitudinal Study (GOALS) is a prospective observational study assessing the interplay of genetic and non-genetic by collecting comprehensive genetic and non-genetic information on 400 participants receiving medication for opioid use disorder. Participants will be assessed at four time points over 1 year. A saliva sample will be collected for large-scale genetic data analyses. Non-genetic assessments include validated surveys measuring addiction severity, depression, anxiety, and adverse childhood experiences, as well as treatment outcomes such as urine toxicology results, visit frequency, and number of pre and post-treatment overdoses extracted from electronic medical records. Discussion We will use these complex data to investigate the relative contributions of genetic and non-genetic risk factors to opioid use disorder and related treatment outcomes.

Introduction: Despite familial hypercholesterolemia (FH) being a common cardiovascular genetic disorder, it is vastly underdiagnosed and undertreated. This is partly due to the lack of systematic screening methods to identify possible FH and little to no implementation of cascade screening approaches in the US. Screening models, such as machine learning algorithms, and family communication methods for cascade screening, such as chatbot technology and direct contact of at-risk relatives by a clinician, may help close the gap in FH identification. Methods: Focus groups were conducted with individuals with FH and clinicians. Focus groups were audio-recorded, transcribed, and coded for acceptability and feasibility of implementing screening models and family communication methods. Results: Individuals with FH and clinicians felt that models analyzing different data sources, including electronic health records, to screen for FH have the potential to activate patients and stimulate patient-clinician conversations about FH. While some expressed privacy and confidentiality concerns, individuals with FH found screening models acceptable, stating that these could have led to an earlier diagnosis and treatment and expressing their frustration with the status quo. Most had a strong desire to be notified of screening models’ outcomes at the same time as their clinician. Clinicians felt strongly that automated models would be helpful in identifying FH. Many with FH felt responsible for notifying their family about FH first; however, some indicated comfort with their clinician, healthcare system, or other professionals helping to communicate FH risk to their relatives via direct contact methods. Further, they indicated a strong willingness to use chatbots to share FH risk information with their relatives. Clinicians felt the need to support their patients and offer their services when sharing FH risk information with relatives, while individuals with FH expressed doubt that their clinicians would have time and resources to provide active support. Conclusions: Individuals with FH and clinicians agreed that FH screening models and enhanced family communication methods would be beneficial, acceptable, and feasible to implement in US healthcare systems.

Background Healthcare policy-makers are expected to develop ‘evidence-based’ policies. Yet, studies have consistently shown that, like clinical practitioners, they need to combine many varied kinds of evidence and information derived from divergent sources. Working in the complex environment of healthcare decision-making, they have to rely on forms of (practical, contextual) knowledge quite different from that produced by researchers. It is therefore important to understand how and why they transform research-based evidence into the knowledge they ultimately use. Methods We purposively selected four healthcare-commissioning organisations working with external agencies that provided research-based evidence to assist with commissioning; we interviewed a total of 52 people involved in that work. This entailed 92 interviews in total, each lasting 20–60 minutes, including 47 with policy-making commissioners, 36 with staff of external agencies, and 9 with freelance specialists, lay representatives and local-authority professionals. We observed 25 meetings (14 within the commissioning organisations) and reviewed relevant documents. We analysed the data thematically using a constant comparison method with a coding framework and developed structured summaries consisting of 20–50 pages for each case-study site. We iteratively discussed and refined emerging findings, including cross-case analyses, in regular research team meetings with facilitated analysis. Further details of the study and other results have been described elsewhere. Results The commissioners’ role was to assess the available care provision options, develop justifiable arguments for the preferred alternatives, and navigate them through a tortuous decision-making system with often-conflicting internal and external opinion. In a multi-transactional environment characterised by interactive, pressurised, under-determined decisions, this required repeated, contested sensemaking through negotiation of many sources of evidence. Commissioners therefore had to subject research-based knowledge to multiple ‘knowledge behaviours’/manipulations as they repeatedly re-interpreted and recrafted the available evidence while carrying out their many roles. Two key ‘incorporative processes’ underpinned these activities, namely contextualisation of evidence and engagement of stakeholders. We describe five Active Channels of Knowledge Transformation – Interpersonal Relationships, People Placement, Product Deployment, Copy, Adapt and Paste, and Governance and Procedure – that provided the organisational spaces and the mechanisms for commissioners to constantly reshape research-based knowledge while incorporating it into the eventual policies that configured local health services. Conclusions Our new insights into the ways in which policy-makers and practitioners inevitably transform research-based knowledge, rather than simply translate it, could foster more realistic and productive expectations for the conduct and evaluation of research-informed healthcare provision.

Background NHS Health Checks is a national cardiovascular risk assessment and management programme in England. To improve equity of uptake in more deprived, and Black, Asian and minority ethnic (BAME) communities, a novel telephone outreach intervention was developed. The outreach call included an invitation to an NHS Health Check appointment, lifestyle questions, and signposting to lifestyle services. We examined the experiences of staff delivering the intervention. Methods Thematic analysis of semi-structured interviews with 10 community Telephone Outreach Workers (TOWs) making outreach calls, and 5 Primary Care Practice (PCP) staff they liaised with. Normalization Process Theory was used to examine intervention implementation. Results Telephone outreach was perceived as effective in engaging patients in NHS Health Checks and could reduce related administration burdens on PCPs. Successful implementation was dependent on support from participating PCPs, and tensions between the intervention and other PCP priorities were identified. Some PCP staff lacked clarity regarding the intervention aim and this could reduce the potential to capitalize on TOWs’ specialist skills. Conclusions To maximize the potential of telephone outreach to impact equity, purposeful recruitment and training of TOWs is vital, along with support and integration of TOWs, and the telephone outreach intervention, in participating PCPs.

Background Up to 18% of genital Chlamydia infections and 9% of Gonorrhoea infections in England are diagnosed in Primary Care. Evidence suggests that a substantial proportion of these cases are not managed appropriately in line with national guidelines. With the increase in sexually transmitted infections and the emergence of antimicrobial resistance, their timely and appropriate treatment is a priority. We investigated feasibility and acceptability of extending the National Chlamydia Screening Programme’s centralised, nurse-led, telephone management (NLTM) as an option for management of all cases of chlamydia and gonorrhoea diagnosed in Primary Care. Methods Randomised feasibility trial in 11 practices in Bristol with nested qualitative study. In intervention practices patients and health care providers (HCPs) had the option of choosing NLTM or usual care for all patients tested for Chlamydia and Gonorrhoea. In control practices patients received usual care. Results One thousand one hundred fifty-four Chlamydia/gonorrhoea tests took place during the 6-month study, with a chlamydia positivity rate of 2.6% and gonorrhoea positivity rate of 0.8%. The NLTM managed 335 patients. Interviews were conducted with sixteen HCPs (11 GPs, 5 nurses) and 12 patients (8 female). HCPs were positive about the NLTM, welcomed the partner notification service, though requested more timely feedback on the management of their patients. Explaining the NLTM to patients didn’t negatively impact on consultations. Patients found the NLTM acceptable, more convenient and provided greater anonymity than usual care. Patients appreciated getting a text message regarding a negative result and valued talking to a sexual health specialist about positive results. Conclusion Extension of this established NLTM intervention to a greater proportion of patients was both feasible and acceptable to both patients and HCP, could provide a better service for patients, whilst decreasing primacy care workload. The study provides evidence to support the wider implementation of this NLTM approach to managing chlamydia and gonorrhoea diagnosed in primary care.

ObjectivesTo investigate experiences of implementing a new rapid sexual health testing, diagnosis and treatment service.DesignA theory-based qualitative evaluation with a focused ethnographic approach using non-participant observations and interviews with patient and clinic staff. Normalisation process theory was used to structure interview questions and thematic analysis.SettingA sexual health centre in Bristol, UK.Participants26 patients and 21 staff involved in the rapid sexually transmitted infection (STI) service were interviewed. Purposive sampling was aimed for a range of views and experiences and sociodemographics and STI results for patients, job grades and roles for staff. 40 hours of observations were conducted.ResultsImplementation of the new service required co-ordinated changes in practice across multiple staff teams. Patients also needed to make changes to how they accessed the service. Multiple small ‘pilots’ of process changes were necessary to find workable options. For example, the service was introduced in phases beginning with male patients. This responsive operating mode created challenges for delivering comprehensive training and communication in advance to all staff. However, staff worked together to adjust and improve the new service, and morale was buoyed through observing positive impacts on patient care. Patients valued faster results and avoiding unnecessary treatment. Patients reported that they were willing to drop-off self-samples and return for a follow-up appointment, enabling infection-specific treatment in accordance with test results, thus improving antimicrobial stewardship.ConclusionsThe new service was acceptable to staff and patients. Implementation of service changes to improve access and delivery of care in the context of stretched resources can pose challenges for staff at all levels. Early evaluation of pilots of process changes played an important role in the success of the service by rapidly feeding back issues for adjustment. Visibility to staff of positive impacts on patient care is important in maintaining morale.

Guided by the Conceptual Model of Implementation Research, we explored the acceptability, appropriateness, and feasibility of: (1) automated screening approaches utilizing existing health data to identify those who require subsequent diagnostic evaluation for familial hypercholesterolemia (FH) and (2) family communication methods including chatbots and direct contact to communicate information about inherited risk for FH. Focus groups were conducted with 22 individuals with FH (2 groups) and 20 clinicians (3 groups). These were recorded, transcribed, and analyzed using deductive (coded to implementation outcomes) and inductive (themes based on focus group discussions) methods. All stakeholders described these initiatives as: (1) acceptable and appropriate to identify individuals with FH and communicate risk with at-risk relatives, and (2) feasible to implement in current practice. Stakeholders cited current initiatives, outside of FH (e.g., pneumonia protocols, colon cancer and breast cancer screenings), that gave them confidence for successful implementation. Stakeholders described perceived obstacles, such as nonfamiliarity with FH, that could hinder implementation and potential solutions to improve systematic uptake of these initiatives. Automated health data screening, chatbots, and direct contact approaches may be useful for patients and clinicians to improve FH diagnosis and cascade screening.

Focusing on imprisonment in Scotland during the 1980s–1990s, and drawing on extensive archival research, documentary analysis and interviews with seven retired civil servants and prison governors, this article is the first to provide an historical and analytical account of Scottish penal exceptionalism. It is argued that although not being punitive in its penal transformation, Scotland cannot rightly be defined as a historically moderate and humane exception when it comes to its prison system. Instead it is shown how the Scottish power to imprison was modernized and made more civilized, allowing prison's inevitable pains to be denied and submerged.

Background: The NHS Health Checks preventative programme aims to reduce cardiovascular morbidity across England. To improve equity in uptake, telephone outreach was developed in Bristol, involving community workers telephoning patients amongst communities potentially at higher risk of cardiovascular disease and/or less likely to take up a written invitation, to engage them with NHS Health Checks. Where possible, caller cultural background/main language is matched with that of the patient called. The call includes an invitation to book an NHS Health Check appointment, lifestyle questions from the Health Check, and signposting to lifestyle services. Objective: To explore the experiences of patients who received an outreach call. Design/Setting/Participants: Thematic analysis of semi-structured interviews with 24 patients (15 female), from seven primary care practices, who had received an outreach call. Results: The call increased participants’ understanding of NHS Health Checks and overcame anticipated difficulties with making an appointment. Half reported that they would not have booked if only invited by letter. The cultural identity/language skills of the caller were important in facilitating the interaction for some who might otherwise encounter language or cultural barriers. The inclusion of lifestyle questions and signposting prompted a minority to make lifestyle changes. Conclusions: Participants valued easily generalizable aspects of the intervention—a telephone invitation with ability to book during the call—and reported that it prompted acceptance of an NHS Health Check. A caller who shared their main language/cultural background was important for a minority of participants, and improved targeting of this would be beneficial.

IntroductionEthical issues arise daily in the delivery of palliative care. Despite much (largely theoretical) literature, evidence from specialist palliative care practitioners (SPCPs) about real-world ethical challenges has not previously been synthesised. This evidence is crucial to inform education and training and adequately support staff. The aim of this systematic review is to synthesise the evidence regarding the ethical challenges which SPCPs encounter during clinical practice.Methods and AnalysisWe will conduct a systematic review with narrative synthesis of empirical studies that use inductive methods to describe the ethical challenges reported by SPCPs. We will search multiple databases (MEDLINE, Philosopher’s Index, EMBASE, PsycINFO, LILACS, WHOLIS, Web of Science and CINAHL) without time, language or geographical restrictions. Keywords will be developed from scoping searches, consultation with information specialists, and reference to key systematic reviews in palliative care and bioethics. Reference lists of included studies will be hand-searched. 10% of retrieved titles and abstracts will be independently dual screened, as will all full text papers. Quality will be dual assessed using the Mixed-Methods Appraisal Tool (2018). Narrative synthesis following Popay et al (2006) will be used to synthesise findings. The strength of resulting recommendations will be assessed using the Grading of Recommendations Assessment, Development and Evaluation approach for qualitative evidence (GRADE-CERQual).Ethics and DisseminationAs this review will include only published data, no specific ethical approval is required.We anticipate that the systematic review will be of interest to palliative care practitioners of all backgrounds, and educators in palliative care and medical ethics. Findings will be presented at conferences and published open access in a peer-reviewed journal.PROSPERO Registration number: CRD42018105365

Background Ethical issues arise daily in the delivery of palliative care. Despite much (largely theoretical) literature on the ethics of palliative care, evidence from specialist palliative care practitioners (SPCPs) about the day-to-day ethical challenges they encounter has not previously been synthesised. This evidence is crucial to inform education and training, and support staff. Aim To synthesise the evidence regarding the ethical challenges which SPCPs of all professional backgrounds encounter during clinical practice. Methods A prospectively registered systematic literature review using narrative synthesis methodology (Popay et al 2006) was conducted. Key words and subject headings of 8 databases (MEDLINE, Philosopher’s Index, EMBASE, PsycINFO, LILACS, WHOLIS, Web of Science and CINAHL) were searched on 03/10/2018, without time limits. Eligible papers reported original research using inductive methods to describe SPCP-reported ethical challenges, in any language. Quality was dual assessed using the Mixed-Methods Appraisal Tool. Tabulation, textural description, concept mapping and thematic analysis were used to develop and present the narrative. Results 7040 records were screened. 12 studies from 9 countries were included. All included studies examined adult care. A broad range of ethical challenges were identified in 5 themes: patient-related (e.g. autonomy, truth-telling), patient-family relationship (e.g. boundaries of confidentiality, family-patient conflict), clinical issues (e.g. futility, palliative sedation), organisational factors (e.g. value differences between professions and care settings, place of care), and wider system (e.g. euthanasia, organ donation). Conclusion SPCPs encounter a broad range of ethical challenges, not all of which are recognised in the ethics literature or form part of training curricula. In particular, the challenges of differing value positions between hospice and curative sectors and genetics ethics seldom occur in theoretical discussions of palliative care ethics or training, while withdrawal of life-prolonging treatment and euthanasia are more commonly represented. Findings of the review can inform SPCP ethics education, training and support.

The objectives of this study were to determine whether differences in CYP2C8 and CYP2C9 haplotype influence the dose of ibuprofen self-administered by individuals, and to examine the potential relationship between CYP2C8 and CYP2C9 reduced metabolism haplotypes and adverse events.We investigated relationships between genetic variations in CYP2C8 and CYP2C9 and ibuprofen use, dose, and side effects (reported by questionnaire) in 445 participants from the Coriell Personalized Medicine Collaborative.Carriers of reduced metabolism haplotypes for CYP2C8 (*2, *3, *4) and CYP2C9 (*2, *3) were significantly (P=0.0171) more likely than those lacking these variants to take less than the recommended dose of ibuprofen, after controlling for sex, age, race, and cohort. In contrast to ibuprofen dose, there were no differences in ibuprofen use frequency or reported side effects based on haplotype. However, there are often no early signs of acute kidney injury, the most serious side effect of elevated ibuprofen exposure.These results suggest a subset of individuals with genetic variation in CYP2C8 and CYP2C9 recognize that they obtain adequate drug efficacy with lower ibuprofen doses, or take lower doses due to prior side effects. However, most (82.6%) individuals with reduced metabolism haplotypes nonetheless took recommended or higher doses, potentially putting them at increased risk for side effects.

Background For several years, EDs in the UK NHS have faced considerable increases in attendance rates. Walk-in centres (WiCs) and minor injuries units (MIUs) have been suggested as solutions. We aimed to investigate the associations between practice and practice population characteristics with ED attendance rates or combined ED/WiC/MIU attendance, and the associations between WiC/MIU and ED attendance. Methods We used general practice-level data including 7462 English practices in 2012/2013 and present adjusted regression coefficients from linear multivariable analysis for relationships between patients9 emergency attendance rates and practice characteristics. Results Every percentage-point increase in patients reporting inability to make an appointment was associated with an increase in emergency attendance by 0.36 (95% CI 0.06 to 0.66) per 1000 population. Percentage-point increases in patients unable to speak to a general practitioner (GP)/nurse within two workdays and patients able to speak often to their preferred GP were associated with increased emergency attendance/1000 population by 0.23 (95% CI 0.05 to 0.42) and 0.10 (95% CI 0.00 to 0.19), respectively. Practices in areas encompassing several towns (conurbations) had higher attendance than rural practices, as did practices with more non-UK-qualified GPs. Practice population characteristics associated with increased emergency attendance included higher unemployment rates, higher percentage of UK whites and lower male life expectancy, which showed stronger associations than practice characteristics. Furthermore, higher MIU or WiC attendance rates were associated with lower ED attendance rates. Conclusions Improving availability of appointments and opportunities to speak a GP/nurse at short notice might reduce ED attendance. Establishing MIUs and WiCs might also reduce ED attendance.