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This collection profiles understudied figures in the book and print trades of the eighteenth century. With an explicit focus on intervening in the critical history of the trades, this volume profiles seven women and three men, emphasising the broad range of material, cultural, and ideological work these people undertook. It offers a biographical introduction to each figure, placing them in their social, professional, and institutional settings. The collection considers varied print trade roles including that of the printer, publisher, business-owner, and bookseller, as well as several specific trade networks and numerous textual forms. The biographies draw on extensive new archival research, with details of key sources for further study on each figure. Chronologically organised, this Element offers a primer both on individual figures and on the tribulations and innovations of the print trade in the century of national and print expansion.
There is a lack of knowledge on deaths related to police use of force across Canada. Tracking (In)Justice is a research project that is trying to make sense of the life and death outcomes of policing through developing a collaborative, interdisciplinary, and open-source database using publicly available sources. With a collaborative data governance approach, which includes communities most impacted and families of those killed by police, we document and analyze 745 cases of police-involved deaths when intentional force is used across Canada from 2000 to 2023. The data indicate a steady rise in deaths, in particular shooting deaths, as well as that Black and Indigenous people are over-represented. We conclude with reflections on the ethical complexities of datafication, knowledge development of what we call death data and the challenges of enumerating deaths, pitfalls of official sources, the data needs of communities, and the living nature of the Tracking (In)Justice project.
Aerosol-cloud interactions contribute significant uncertainty to modern climate model predictions. Analysis of complex observed aerosol-cloud parameter relationships is a crucial piece of reducing this uncertainty. Here, we apply two machine learning methods to explore variability in in-situ observations from the NASA ACTIVATE mission. These observations consist of flights over the Western North Atlantic Ocean, providing a large repository of data including aerosol, meteorological, and microphysical conditions in and out of clouds. We investigate this dataset using principal component analysis (PCA), a linear dimensionality reduction technique, and an autoencoder, a deep learning non-linear dimensionality reduction technique. We find that we can reduce the dimensionality of the parameter space by more than a factor of 2 and verify that the deep learning method outperforms a PCA baseline by two orders of magnitude. Analysis in the low dimensional space of both these techniques reveals two consistent physically interpretable regimes—a low pollution regime and an in-cloud regime. Through this work, we show that unsupervised machine learning techniques can learn useful information from in-situ atmospheric observations and provide interpretable results of low-dimensional variability.
Objectives/Goals: Discovery Day aims to bring diverse and underrepresented groups of potential biomedical research participants into research spaces to increase transparency, knowledge of the research process, trust in research, and interest in STEM fields. Methods/Study Population: Discovery Days are one-day events held on Saturdays at a large hospital in the Midwest. Attendees are recruited through flyers, social media, and other media. Recruitment targets communities that are predominantly underrepresented in research, such as Black/African American and Hispanic/Latino. Events included lunch, presentations, interactive lab demonstrations, Q&A sessions, and a tour of the BioBank research facility. Families completed surveys assessing demographics, trust in research, understanding of research, and interest in STEM careers. Descriptive statistics were used to summarize findings. Results/Anticipated Results: At a Discovery Day held in May 2024, 58 individuals attended. Each family (N = 30) completed a 15-item survey. Most (70%) participants identified with diverse racial and ethnic backgrounds, with the largest group identifying as Black/African American. Five diverse neighborhoods were represented, as expected for our recruitment strategy. Following Discovery Day, 73.3% of participants reported their trust in research increased, and 93.1% of participants indicated their understanding of research increased. 37.5% reported interest in learning about STEM jobs or internships, and 100% of participants would recommend Discovery Day to friends and family. Discussion/Significance of Impact: We hope that by increasing transparency and trust around the research process, community members that may benefit from research (e.g., genetic research on chronic diseases) may be more likely to participate. Additional findings and future goals for Discovery Day will be discussed.
Objectives/Goals: The goal of this poster is to 1) describe the development of a graduate certificate program for community-engaged research for health (CEnRH) in a Clinical and Translational Science Awards-funded institution; 2) describe the initial impact of the program; and 3) discuss strengths, implications, and potential improvements for the future. Methods/Study Population: The CEnRH graduate certificate is a 12-credit, postbaccalaureate program offered at the University of Cincinnati co-created by faculty from the Community Engagement and Translational Workforce Cores of the CCTST with community partners. The goal is to support learning about community-engaged research (CEnR) and enhances capacity for academic-community partnered research. Student demographics are collected as part of university registration. Quantitative course evaluations are collected each semester. Program evaluations including qualitative data are collected from students enrolled in the program during and upon completion of the certificate. Results/Anticipated Results: The CEnRH curriculum includes 3 existing courses/electives in the College of Medicine and Psychology and three new courses in social justice and action research methodologies. Notably, the committee advocated for a scholarship to cover tuition for the certificate program to promote access for community partners. Since the fall of 2022, 17 students have enrolled in the CEnRH program, including 9 Faculty/Staff within CCTST institutions, 2 University of Cincinnati PhD Students, 5 Fellows, and 1 Community Member (who receives the scholarship). Notably, 24% of these students are from underrepresented minority backgrounds. Impact and evaluation data, as well as lessons learned, will be presented. Future directions for the CEnRH program will also be discussed. Discussion/Significance of Impact: The CEnRH is an impactful program for trainees, faculty, and staff who are planning to conduct CEnR, while also strengthening research capacity among community partners and advocates. This certificate program may be especially valuable to academic researchers as more funding agencies require community and stakeholder engagement in their proposals.
To facilitate and sustain community-engaged research (CEnR) conducted by academic-community partnerships (ACPs), a Clinical Translational Science Award (CTSA)-funded Community Engagement Core (CEC) and Community Partner Council (CPC) co-created two innovative microgrant programs. The Community Health Grant (CHG) and the Partnership Development Grant (PDG) programs are designed to specifically fund ACPs conducting pilot programs aimed at improving health outcomes. Collectively, these programs have engaged 94 community partner organizations while impacting over 55,000 individuals and leveraging $1.2 million to fund over $10 million through other grants and awards. A cross-sectional survey of 57 CHG awardees demonstrated high overall satisfaction with the programs and indicated that participation addressed barriers to CEnR, such as building trust in research and improving partnership and program sustainability. The goal of this paper is to (1) describe the rationale and development of the CHG and PDG programs; (2) their feasibility, impact, and sustainability; and (3) lessons learned and best practices. Institutions seeking to implement similar programs should focus on integrating community partners throughout the design and review processes and prioritizing projects that align with specific, measurable goals.
Differences in social behaviours are common in young people with neurodevelopmental conditions (NDCs). Recent research challenges the long-standing hypothesis that difficulties in social cognition explain social behaviour differences.
Aims
We examined how difficulties regulating one's behaviour, emotions and thoughts to adapt to environmental demands (i.e. dysregulation), alongside social cognition, explain social behaviours across neurodiverse young people.
Method
We analysed cross-sectional behavioural and cognitive data of 646 6- to 18-year-old typically developing young people and those with NDCs from the Province of Ontario Neurodevelopmental Network. Social behaviours and dysregulation were measured by the caregiver-reported Adaptive Behavior Assessment System Social domain and Child Behavior Checklist Dysregulation Profile, respectively. Social cognition was assessed by the Neuropsychological Assessment Affect-Recognition and Theory-of-Mind, Reading the Mind in the Eyes Test, and Sandbox continuous false-belief task scores. We split the sample into training (n = 324) and test (n = 322) sets. We investigated how social cognition and dysregulation explained social behaviours through principal component regression and hierarchical regression in the training set. We tested social cognition-by-dysregulation interactions, and whether dysregulation mediated the social cognition–social behaviours association. We assessed model fits in the test set.
Results
Two social cognition components adequately explained social behaviours (13.88%). Lower dysregulation further explained better social behaviours (β = −0.163, 95% CI −0.191 to −0.134). Social cognition-by-dysregulation interaction was non-significant (β = −0.001, 95% CI −0.023 to 0.021). Dysregulation partially mediated the social cognition–social behaviours association (total effect: 0.544, 95% CI 0.370–0.695). Findings were replicated in the test set.
Conclusions
Self-regulation, beyond social cognition, substantially explains social behaviours across neurodiverse young people.
Involving patients in the health technology assessment (HTA) lifecycle is a core principle at the National Institute for Health and Care Excellence (NICE). To achieve this, NICE has adopted a mixed approach to patient and public involvement and engagement (PPIE) spanning the entire appraisal process. To ensure the PPIE approach enables meaningful involvement, NICE engaged with stakeholders to review its effectiveness and identify areas for improvement.
Methods
In 2023, an independent consultant reviewed NICE’s PPIE approach and engaged with NICE staff and external stakeholders from patient organizations, individual patient contributors, and engagement leads at national health and social care organizations. The engagement included interviews with NICE staff (n=19) and external stakeholders (n=13), and an online survey that received 83 responses from patient organizations and patient contributors. Using this feedback, NICE’s patient and public involvement program conducted four focus groups to develop a framework of improved methods and processes for PPIE with NICE staff, patient organizations, and patient contributors.
Results
The engagement identified many positives in NICE’s approach to PPIE, including:
• lay members sitting on each HTA committee as equal members
• patient organizations providing written evidence to HTA committees
• patient experts providing written and verbal testimony to HTA committees
• support provided by NICE.
The engagement also identified areas where PPIE could have a greater impact, including:
• improved methods for collecting patient evidence and insight
• strengthening the role of lay members
• collating and reusing previously collected patient evidence
• taking a proportionate approach to involving small organizations
• allocating staff resources to focus on impactful PPIE practices.
Conclusions
NICE has developed a draft framework for an improved approach to increase the impact of PPIE in HTA decision-making. In 2024, NICE will publicly consult with NICE staff and external stakeholders to review the framework, agree the strategic aims, and develop metrics for measuring success. Following this consultation, the findings and NICE’s updated approach to PPIE will be presented.
The National Institute for Health and Care Excellence (NICE) heard from small organizations how resource intensive and difficult it is for them participate in medicines health technology assessments (HTA) since the COVID-19 pandemic. To provide additional support for these organizations or to provide alternative patient input, NICE explored implementing surveys directly with patients to share with patient stakeholder organizations and NICE’s HTA medicines committees.
Methods
Patient organizations and colleagues at NICE were included in the background investigation. Informal interviews were conducted with the HTA bodies in Wales and health technology colleagues in NICE about their experience of this method of patient input.
Two approaches were piloted:
(i) Developing the online questionnaire using the Summary of Information for Patients.
(ii) Developing a jointly branded questionnaire collaboratively with the patient organization and implementing a data-sharing agreement to share the raw data.
The survey was distributed by the patient organization, analyzed by NICE, and shared with the patient organization to inform their submission to NICE.
Results
The results of the background investigation showed that the option to include this additional method of input could provide valuable support for patient organizations and has the potential to increase the amount and quality of patient input to an HTA committee.
Both pilots were successful in:
• Supporting patient organizations’ input into a medicines HTA
• Reducing the resources required from patient organizations.
The second pilot added more value due to:
• Collaboration, relationship, and building trust
• Joint development of the survey
• Data sharing and potential to add to patient evidence about a disease and treatments.
Conclusions
Surveys conducted directly with patients can help patient organizations participate in medicines HTAs, but they are only one element of developing more innovative and sustainable patient involvement in the process. HTA bodies need to innovate and work collaboratively with patient stakeholders to produce a menu of options for involvement so that it can be tailored to stakeholders’ resources.
Over the past twenty-five years, the Center for Health Law, Ethics, and Human Rights (CLER) has been a leader in torture treatment, advocacy, and education. In 1998, the Boston Center for Refugee Health and Human Rights (BCRHHR) was founded to provide holistic treatment to asylum seekers who have been tortured by their governments and justifiably feared further persecution if they returned to their countries. Seeking justice is an important part of healing for survivors, and BCRHHR clinicians work closely with immigration attorneys to document clinical evidence of torture to support asylum applications. Following the September 11 attacks in 2001, it was revealed that the U.S. government tortured captives and committed other war crimes. CLER scholars examined how doctors and lawyers worked with the Central Intelligence Agency (CIA) to rationalize and sanitize torture, providing legal immunity for perpetrators. My colleagues and I at CLER assumed a national leadership role in opposing practices that constitute torture, as well as cruel, inhumane, and degrading treatment. These practices included the force-feeding of hunger strikers, the Rendition, Detention, and Interrogation (RDI) program (a covert operation involving disappearances, extrajudicial detentions, and torture of suspects in the so-called “War on Terror”), the use of lawyers and physicians to justify these actions, and U.S. policies that authorized torture. We met with military officials of the Department of Defense (DOD) and hosted a meeting with international experts to brainstorm solutions. We evaluated the devastating effects of the U.S. torture program on detainees and testified in the military commission’s pretrial hearings for a detainee accused of terrorism.
Doctors and lawyers at the CLER have focused on understanding contemporary torture and the relevance of the Nuremberg Doctors’ Trial which condemned Nazi doctors for torturing prisoners. The CLER continues to promote the importance of International Human Rights Law.
Why do governments that redistribute property on a massive scale so frequently fail to grant property rights to land beneficiaries? A recent contribution answers this important question by suggesting that countries involved in major land reforms suffer from ‘property gaps’, while those that did not, like Colombia, are in a much better situation. Based on the Colombian case, we challenge this conclusion. We show that, far from having clear property rights over rural land, the country suffers from very serious gaps, both in a broad and narrow sense. This substantially weakens the purported negative association between redistribution and well-established property rights, and also reveals the glaring limitations of the liberal conceptualisations of such rights when applied to democratic states with gaping inequality in land distribution and violent conflicts over rural land.
Loss of control eating is more likely to occur in the evening and is uniquely associated with distress. No studies have examined the effect of treatment on within-day timing of loss of control eating severity. We examined whether time of day differentially predicted loss of control eating severity at baseline (i.e. pretreatment), end-of-treatment, and 6-month follow-up for individuals with binge-eating disorder (BED), hypothesizing that loss of control eating severity would increase throughout the day pretreatment and that this pattern would be less pronounced following treatment. We explored differential treatment effects of cognitive-behavioral guided self-help (CBTgsh) and Integrative Cognitive-Affective Therapy (ICAT).
Methods
Individuals with BED (N = 112) were randomized to receive CBTgsh or ICAT and completed a 1-week ecological momentary assessment protocol at baseline, end-of-treatment, and 6-month follow-up to assess loss of control eating severity. We used multilevel models to assess within-day slope trajectories of loss of control eating severity across assessment periods and treatment type.
Results
Within-day increases in loss of control eating severity were reduced at end-of-treatment and 6-month follow-up relative to baseline. Evening acceleration of loss of control eating severity was greater at 6-month follow-up relative to end-of-treatment. Within-day increases in loss of control severity did not differ between treatments at end-of-treatment; however, evening loss of control severity intensified for individuals who received CBTgsh relative to those who received ICAT at 6-month follow-up.
Conclusions
Findings suggest that treatment reduces evening-shifted loss of control eating severity, and that this effect may be more durable following ICAT relative to CBTgsh.
Symptoms relating to the musculoskeletal system are among the most common complaints registered by pregnant women. The maternal axial skeleton is subjected to considerable gestational changes and stresses; congenital and acquired skeletal anomalies may impact both the process and outcome of gestation and labor. The most common anomaly is scoliosis, arising either in the idiopathic form or from an underlying neuromuscular disorder. Other less common conditions include symptomatic lumbar disc herniation, ankylosing spondylitis, spondylolysis, and spondylolisthesis. Most scoliotic patients will experience pregnancy, labor, and delivery with a similar incidence of complications as the general population. However, within the population of scoliotic parturients, there is a subpopulation at higher risk for morbidity and mortality. These patients include those with scoliosis resulting from neuromuscular disorders and severe restrictive pulmonary disease complicated by pulmonary hypertension. A multidisciplinary team approach best serves these patients. The obstetric and anesthetic management of patients with less common and less extreme vertebral syndromes is guided by individual case characteristics.
Class III obesity is associated with increased risk for cognitive impairment. Though hypothesized to be partially attributable to sedentary time (ST), past research examining the association between ST and cognitive function has produced mixed findings. One possible explanation is that studies do not typically account for the highly correlated and almost inverse relationship between ST and light intensity physical activity (LPA), such that ST displaces time engaging in LPA. Therefore, we aimed to evaluate whether: (1) higher ST-to-LPA time ratio associates with poorer performance across multiple cognitive domains in patients with Class III obesity seeking bariatric surgery; and (2) the associations differ by sex.
Participants and Methods:
Participants (N = 121, 21-65 years of age, BMI > 40 kg/m2) scheduled for either Roux-en-Y Gastric Bypass (RYGB) or Sleeve Gastrectomy (SG) completed the NIH Toolbox, a computerized neuropsychological assessment battery and wore a waist-mounted ActiGraph monitor during waking hours for 7 days to measure minutes/day spent in ST, LPA, and moderate-to-vigorous physical activity (MVPA). A ratio of time spent in ST-to-LPA was calculated by dividing the percentage of daily wear time spent in sedentary behavior (SB) by the percentage of daily wear time spent in LPA.
Results:
On average, participants (mean age = 43.22 years old and BMI = 45.83 kg/m2) wore the accelerometer for 909±176 minutes/day and spent 642±174 minutes/day in ST, 254±79 minutes/day in LPA, and 14±13 minutes/day in MVPA. Mean daily ST-to-LPA time ratio was 2.81 ± 1.3 (0.73-7.11). Overall, bivariate Pearson correlations found no significant relationships between LPA and cognitive performance on any of the NIH Toolbox subtests (r values = -.002 to -.158, all p values >.05). Additionally, bivariate Pearson correlations also found no significant relationships between daily ST-to-LPA time ratio and cognitive performance on any of the subtests (r values = .003 to .108, all p values >.05). However, higher ST-to-LPA was associated with lower scores on the Dimensional Change Card Sort Test in women (r = -.26, p = .01).
Conclusions:
Results showed that participants’ mean daily time spent in ST was 2.5 times higher than that spent in LPA and a higher ratio of ST-to-LPA was associated with poorer set-shifting in women with Class III obesity. Future studies should look to clarify underlying mechanisms, particularly studies examining possible sex differences in the cognitive benefits of PA. Similarly, intervention studies are also needed to determine if increasing LPA levels for individuals with Class III obesity would lead to improved cognitive performance by means of reducing ST.
The National Institute for Health and Care Excellence (NICE) is piloting a new innovative approach to the way digital products, devices, and diagnostics that most reflect system need and demand are assessed. This early value assessment (EVA) approach will allow a more rapid assessment to enable patients to benefit from promising technologies sooner. Involving patients in the health technology assessment (HTA) lifecycle is a core principle at NICE, but established methods are not suitable for a rapid timeframe. NICE needs to adapt the approach to ensure that patients are supported to participate in EVAs and that their involvement is meaningful.
Methods
Due to the rapid timeframe, it was important to ensure patient contributors were not overloaded with information and that contact points were aligned. NICE reviewed the standard induction, support documents, and contact points to adapt the support provided. This included:
• updating recruitment documents to communicate the role of the committee and the EVA process;
• combining induction meetings between various NICE teams and providing recorded presentations;
• organizing earlier peer support with experienced lay members; and
• advising which of NICE’s nine online modules were most relevant.
Results
Support for patient contributors has been an important part of the HTA process, so enabling people to prepare and confidently deliver content at a committee meeting is vital. There has been some variation in the processes for different topics, but the feedback received from patient contributors indicated that their involvement was meaningful and valued. This was attributed to their close working relationship with the project team. NICE is collecting feedback from all patient contributors using an online survey. The findings of this survey and the evaluation of the support mechanisms will be presented.
Conclusions
Despite shorter timeframes, patient involvement has not been compromised. NICE will use the feedback from patient contributors to review and adapt the induction process and support offered. This will support patient contributors and enable NICE to allocate appropriate resources in the shortened timeframe.
Changes in abundance and distribution of marine top predators can indicate environmental change or anthropogenic pressure requiring management response. Here, we used an extensive dataset (21 years) to conduct a spatial and temporal analysis of grey seal strandings in Cornwall and the Isles of Scilly, close to the southern edge of the breeding range of the species. A total of 2007 strandings were reported from 2000 to 2020, increasing by 474% from 35 to 201 individuals per year during this period. The continued rise in strandings was consistent across all life stages and timeframes (5, 10 and 20 years), underpinning the suggestion of increasing abundance in the region. The observed seasonality differed by life stage, coinciding with the increased presence of animals near the coast for key life phases such as breeding, moulting and pupping. Strandings are widely distributed across the coast of Cornwall and the Isles of Scilly; however, most strandings were recorded on the north coast of Cornwall (70%) where major pupping and haul out sites are found. Despite hosting several pupping and haul out sites, a small proportion was recorded on the Isles of Scilly (5%) where it is thought that strandings are particularly underreported. Describing baselines in magnitude of strandings and life-stage compositions across space and time allows future deviations in frequency, demographic composition or spatial distribution to be detected and investigated. We demonstrate the utility of long-term citizen science data to provide valuable and cost-effective information on the distribution and abundance of a highly mobile marine mammal.
Parent and child mental health has suffered during the pandemic and transition phase. Structured and shared parenting may be intervention targets beneficial to families who are struggling with parent or child mental health challenges.
Aims
First, we investigated associations between structured and shared parenting and parent depression symptoms. Second, we investigated associations between structured and shared parenting and depression, hyperactivity/inattention and irritability symptoms in children.
Method
A total of 1027 parents in two-parent households (4797 observations total; 85.1% mothers) completed online surveys about themselves and their children (aged 2–18 years) from April 2020 to July 2022. Structured parenting and shared parenting responsibilities were assessed from April 2020 to November 2021. Symptoms of parent depression, child depression, child hyperactivity and inattention, child irritability, and child emotional and conduct problems were assessed repeatedly (one to 14 times; median of four times) from April 2020 to July 2022.
Results
Parents who reported higher levels of shared parenting responsibilities had lower depression symptoms (β = −0.09 to −0.32, all P < 0.01) longitudinally. Parents who reported higher levels of shared parenting responsibilities had children with fewer emotional problems (ages 2–5 years; β = −0.07, P < 0.05), fewer conduct problems (ages 2–5 years; β = −0.09, P < 0.01) and less irritability (ages 13–18 years; β = −0.27, P < 0.001) longitudinally. Structured parenting was associated with fewer conduct problems (ages 2–5 years; β = −0.05, P < 0.05).
Conclusions
Shared parenting is beneficial for parent and child mental health, even under chaotic or inflexible life conditions. Structured parenting is beneficial for younger children.
To analyse the implementation of front-of-pack nutrition labelling (FOPNL) in Mexico.
Design:
Review of publicly accessible documents, including legislative websites, news sources, and government, intergovernmental, and advocacy reports. Usage of the policy cycle model to analyse the implementation and evaluation stages of Mexico’s General Health Law, amended with FOPNL (2019–2022).
Results:
In October 2019, the government published a draft modification of the Norma Oficial Mexicana (Official Mexican Standard) to regulate and enforce a new FOPNL warning label system. A 60-d public consultation period followed (October–December 2019), and the regulation was published in March 2020 and implementation began in October 2020. An analysis of nine key provisions of the Standard revealed that the food and beverage industry and its allies weakened some original provisions including health claims, warnings for added sweeteners and display areas. On the other hand, local and international public health groups maintained key regulations including the ban on cartoon character advertisements, standardised portions and nutrient criteria following international best practices. Early implementation appears to have high compliance and helped contribute to reformulating unhealthy products. Continued barriers to implementation include industry efforts to create double fronts and market their cartoon characters on social media and through digitalised marketing.
Conclusion:
Early success in implementing the new FOPNL system in Mexico was the result of an inclusive and participatory regulatory process dedicated to maintaining public health advances, local and international health advocacy support, and continued monitoring. Other countries proposing and enacting FOPNL should learn from the Mexican experience to maintain scientifically proven best practices, counter industry barriers and minimise delays in implementation.