The DiSCmap project : digitisation of special collections: mapping, assessment, prioritisation

The paper presents the outcomes of DiSCmap, a JISC and RIN-funded project which aimed to study users' priorities for digitisation of special collections within the context of the higher education institutions in the UK. The project produced a 'long list' of 945 collections nominated for digitisation by intermediaries and end users and a user-driven prioritisation framework. Web surveys were used as a tool to gather data in combination with focus groups and telephone interviews with end users helped to get additional insights on their views in particular domains. The project developed an online forum and a group in Facebook in order to find to what extent the social networking technologies can be used to sustain a professional informal community but this did not prove to be successful. Over 1000 specialists took part in the different forms used to gather intermediaries and end users' nominations of collections for the "long list" and opinions about digitisation priorities. The long list of 945 special collections nominated for digitisation can be useful as an evidence of identified user interest; this list is not seen as a "snapshot" but as an outcome which needs to be sustained and further developed in the future. A user-driven framework for prioritizing digitisation was produced; it fits well with the current JISC digitisation strategy, providing a further level of detail on user priorities. The project also suggests a flexible approach for prioritizing collections for digitisation based on the use of the framework in combination with the long list of collections. The project did not make a representative study; the participation of intermediaries and end users was a matter of good will. Yet, special collections from 44% of the higher education institutions in the UK were nominated to the long list. The work on the project provided new insights and evidence on the user priorities in digitisation of special collections. It also suggests a user-driven digitisation prioritization framework which would be of benefit in future decision making

DiSCmap : digitisation of special collections mapping, assessment, prioritisation. Final project report

Traditionally, digitisation has been led by supply rather than demand. While end users are seen as a priority they are not directly consulted about which collections they would like to have made available digitally or why. This can be seen in a wide range of policy documents throughout the cultural heritage sector, where users are positioned as central but where their preferences are assumed rather than solicited. Post-digitisation consultation with end users isequally rare. How are we to know that digitisation is serving the needs of the Higher Education community and is sustainable in the long-term? The 'Digitisation in Special Collections: mapping, assessment and prioritisation' (DiSCmap) project, funded by the Joint Information Systems Committee (JISC) and the Research Information Network (RIN), aimed to:- Identify priority collections for potential digitisation housed within UK Higher Education's libraries, archives and museums as well as faculties and departments.- Assess users' needs and demand for Special Collections to be digitised across all disciplines.- Produce a synthesis of available knowledge about users' needs with regard to usability and format of digitised resources.- Provide recommendations for a strategic approach to digitisation within the wider context and activity of leading players both in the public and commercial sector.The project was carried out jointly by the Centre for Digital Library Research (CDLR) and the Centre for Research in Library and Information Management (CERLIM) and has taken a collaborative approach to the creation of a user-driven digitisation prioritisation framework, encouraging participation and collective engagement between communities.Between September 2008 and March 2009 the DiSCmap project team asked over 1,000 users, including intermediaries (vocational users who take care of collections) and end users (university teachers, researchers and students) a variety of questions about which physical and digital Special Collections they make use of and what criteria they feel must be considered when selecting materials for digitisation. This was achieved through workshops, interviews and two online questionnaires. Although the data gathered from these activities has the limitation of reflecting only a partial view on priorities for digitisation - the view expressed by those institutions who volunteered to take part in the study - DiSCmap was able to develop:- a 'long list' of 945 collections nominated for digitisation both by intermediaries andend-users from 70 HE institutions (see p. 21);- a framework of user-driven prioritisation criteria which could be used to inform current and future digitisation priorities; (see p. 45)- a set of 'short lists' of collections which exemplify the application of user-driven criteria from the prioritisation framework to the long list (see Appendix X):o Collections nominated more than once by various groups of users.o Collections related to a specific policy framework, eg HEFCE's strategically important and vulnerable subjects for Mathematics, Chemistry and Physics.o Collections on specific thematic clusters.o Collections with highest number of reasons for digitisation

The DiSCmap project : overview and first results

Traditionally, digitisation of cultural and scientific heritage material for use by the scholarly community has been led by supply rather than demand. The DiSCmap project commissioned by JISC in 2008, aimed to study what refocussing of digitisation efforts will suit best the users of digitised materials, especially in the context of the research and teaching in the higher education institutions in the UK. The paper presents some of its initial outcomes based on quantitative and qualitative analysis of 945 special collections nominated for digitisation by intermediary users (librarians, archivist and museum curators), as well as end users' study involving a combination of online survey, focus groups and in-depth interviews. The criteria for prioritising digitisation advanced by intermediaries and end users were analysed and cross-mapped to a range of existing digitisation frameworks. A user-driven prioritisation framework which synthesises the findings of the project is presented

Devise: a framework for the evaluation of internet search engines

This project investigates the feasibility of the use of user-satisfaction as a multidimensional evaluative construct of search engines. Search engine developments are reviewed to reveal a range of indexing and retrieval techniques that may assist casual users in the information retrieval task. Yet few evaluation studies have considered the impact of system features, in particular those with which the user interacts for search assistance. A broad review of retrieval system evaluation highlights the complex environment in which measures of both the utility of the search results and the usability of the system are sought from a user-perspective. Our proposed approach for a user-centered evaluation is based on a conceptual framework in which user-satisfaction is characterised as a variable dependent on system features and functions and expressed in a moderating context of user-task requirement. Towards this end, the research reported here focuses on the definition of the construct of user satisfaction on the multi dimensions of the retrieval process, an expression of what a typical user is trying to do. Empirical work was then undertaken to test the feasibility and potential value of the implementation of the framework for the evaluation of three search engines. Initial results are presented which provide a degree of understanding of how users are satisfied and on what criteria. This provides the basis on which we make recommendations for the refinement of the multidimensional framework and its use as a methodology for the evaluation of search engines from a user perspective

Defining the museum of the 21st century: evolving multiculturalism in museums in the United States

This publication brings together a selection of papers presented at the online symposium organized by ICOFOM under the general theme Defining the Museum of the 21st Century, with Southern New Hampshire University in the United States on September 14, 2018.Chung, S.S.C., Leshchenko, A, & Soares, B.B. (Eds.). (2019). Defining the museum of the 21st century: evolving multiculturalism in museums in the United States. Retrieved from http://academicarchive.snhu.ed

Mutations in LAMA1 Cause Cerebellar Dysplasia and Cysts with and without Retinal Dystrophy

Cerebellar dysplasia with cysts (CDC) is an imaging finding typically seen in combination with cobblestone cortex and congenital muscular dystrophy in individuals with dystroglycanopathies. More recently, CDC was reported in seven children without neuromuscular involvement (Poretti-Boltshauser syndrome). Using a combination of homozygosity mapping and whole-exome sequencing, we identified biallelic mutations in LAMA1 as the cause of CDC in seven affected individuals (from five families) independent from those included in the phenotypic description of Poretti-Boltshauser syndrome. Most of these individuals also have high myopia, and some have retinal dystrophy and patchy increased T2-weighted fluid-attenuated inversion recovery (T2/FLAIR) signal in cortical white matter. In one additional family, we identified two siblings who have truncating LAMA1 mutations in combination with retinal dystrophy and mild cerebellar dysplasia without cysts, indicating that cysts are not an obligate feature associated with loss of LAMA1 function. This work expands the phenotypic spectrum associated with the lamininopathy disorders and highlights the tissue-specific roles played by different laminin-encoding genes

Mortality Among Adults With Cancer Undergoing Chemotherapy or Immunotherapy and Infected With COVID-19

Importance: Large cohorts of patients with active cancers and COVID-19 infection are needed to provide evidence of the association of recent cancer treatment and cancer type with COVID-19 mortality. // Objective: To evaluate whether systemic anticancer treatments (SACTs), tumor subtypes, patient demographic characteristics (age and sex), and comorbidities are associated with COVID-19 mortality. // Design, Setting, and Participants: The UK Coronavirus Cancer Monitoring Project (UKCCMP) is a prospective cohort study conducted at 69 UK cancer hospitals among adult patients (≥18 years) with an active cancer and a clinical diagnosis of COVID-19. Patients registered from March 18 to August 1, 2020, were included in this analysis. // Exposures: SACT, tumor subtype, patient demographic characteristics (eg, age, sex, body mass index, race and ethnicity, smoking history), and comorbidities were investigated. // Main Outcomes and Measures: The primary end point was all-cause mortality within the primary hospitalization. // Results: Overall, 2515 of 2786 patients registered during the study period were included; 1464 (58%) were men; and the median (IQR) age was 72 (62-80) years. The mortality rate was 38% (966 patients). The data suggest an association between higher mortality in patients with hematological malignant neoplasms irrespective of recent SACT, particularly in those with acute leukemias or myelodysplastic syndrome (OR, 2.16; 95% CI, 1.30-3.60) and myeloma or plasmacytoma (OR, 1.53; 95% CI, 1.04-2.26). Lung cancer was also significantly associated with higher COVID-19–related mortality (OR, 1.58; 95% CI, 1.11-2.25). No association between higher mortality and receiving chemotherapy in the 4 weeks before COVID-19 diagnosis was observed after correcting for the crucial confounders of age, sex, and comorbidities. An association between lower mortality and receiving immunotherapy in the 4 weeks before COVID-19 diagnosis was observed (immunotherapy vs no cancer therapy: OR, 0.52; 95% CI, 0.31-0.86). // Conclusions and Relevance: The findings of this study of patients with active cancer suggest that recent SACT is not associated with inferior outcomes from COVID-19 infection. This has relevance for the care of patients with cancer requiring treatment, particularly in countries experiencing an increase in COVID-19 case numbers. Important differences in outcomes among patients with hematological and lung cancers were observed

Hospital admission and emergency care attendance risk for SARS-CoV-2 delta (B.1.617.2) compared with alpha (B.1.1.7) variants of concern: a cohort study

Background: The SARS-CoV-2 delta (B.1.617.2) variant was first detected in England in March, 2021. It has since rapidly become the predominant lineage, owing to high transmissibility. It is suspected that the delta variant is associated with more severe disease than the previously dominant alpha (B.1.1.7) variant. We aimed to characterise the severity of the delta variant compared with the alpha variant by determining the relative risk of hospital attendance outcomes. Methods: This cohort study was done among all patients with COVID-19 in England between March 29 and May 23, 2021, who were identified as being infected with either the alpha or delta SARS-CoV-2 variant through whole-genome sequencing. Individual-level data on these patients were linked to routine health-care datasets on vaccination, emergency care attendance, hospital admission, and mortality (data from Public Health England's Second Generation Surveillance System and COVID-19-associated deaths dataset; the National Immunisation Management System; and NHS Digital Secondary Uses Services and Emergency Care Data Set). The risk for hospital admission and emergency care attendance were compared between patients with sequencing-confirmed delta and alpha variants for the whole cohort and by vaccination status subgroups. Stratified Cox regression was used to adjust for age, sex, ethnicity, deprivation, recent international travel, area of residence, calendar week, and vaccination status. Findings: Individual-level data on 43 338 COVID-19-positive patients (8682 with the delta variant, 34 656 with the alpha variant; median age 31 years [IQR 17–43]) were included in our analysis. 196 (2·3%) patients with the delta variant versus 764 (2·2%) patients with the alpha variant were admitted to hospital within 14 days after the specimen was taken (adjusted hazard ratio [HR] 2·26 [95% CI 1·32–3·89]). 498 (5·7%) patients with the delta variant versus 1448 (4·2%) patients with the alpha variant were admitted to hospital or attended emergency care within 14 days (adjusted HR 1·45 [1·08–1·95]). Most patients were unvaccinated (32 078 [74·0%] across both groups). The HRs for vaccinated patients with the delta variant versus the alpha variant (adjusted HR for hospital admission 1·94 [95% CI 0·47–8·05] and for hospital admission or emergency care attendance 1·58 [0·69–3·61]) were similar to the HRs for unvaccinated patients (2·32 [1·29–4·16] and 1·43 [1·04–1·97]; p=0·82 for both) but the precision for the vaccinated subgroup was low. Interpretation: This large national study found a higher hospital admission or emergency care attendance risk for patients with COVID-19 infected with the delta variant compared with the alpha variant. Results suggest that outbreaks of the delta variant in unvaccinated populations might lead to a greater burden on health-care services than the alpha variant. Funding: Medical Research Council; UK Research and Innovation; Department of Health and Social Care; and National Institute for Health Research

Changes in symptomatology, reinfection, and transmissibility associated with the SARS-CoV-2 variant B.1.1.7: an ecological study

Background The SARS-CoV-2 variant B.1.1.7 was first identified in December, 2020, in England. We aimed to investigate whether increases in the proportion of infections with this variant are associated with differences in symptoms or disease course, reinfection rates, or transmissibility. Methods We did an ecological study to examine the association between the regional proportion of infections with the SARS-CoV-2 B.1.1.7 variant and reported symptoms, disease course, rates of reinfection, and transmissibility. Data on types and duration of symptoms were obtained from longitudinal reports from users of the COVID Symptom Study app who reported a positive test for COVID-19 between Sept 28 and Dec 27, 2020 (during which the prevalence of B.1.1.7 increased most notably in parts of the UK). From this dataset, we also estimated the frequency of possible reinfection, defined as the presence of two reported positive tests separated by more than 90 days with a period of reporting no symptoms for more than 7 days before the second positive test. The proportion of SARS-CoV-2 infections with the B.1.1.7 variant across the UK was estimated with use of genomic data from the COVID-19 Genomics UK Consortium and data from Public Health England on spike-gene target failure (a non-specific indicator of the B.1.1.7 variant) in community cases in England. We used linear regression to examine the association between reported symptoms and proportion of B.1.1.7. We assessed the Spearman correlation between the proportion of B.1.1.7 cases and number of reinfections over time, and between the number of positive tests and reinfections. We estimated incidence for B.1.1.7 and previous variants, and compared the effective reproduction number, Rt, for the two incidence estimates. Findings From Sept 28 to Dec 27, 2020, positive COVID-19 tests were reported by 36 920 COVID Symptom Study app users whose region was known and who reported as healthy on app sign-up. We found no changes in reported symptoms or disease duration associated with B.1.1.7. For the same period, possible reinfections were identified in 249 (0·7% [95% CI 0·6–0·8]) of 36 509 app users who reported a positive swab test before Oct 1, 2020, but there was no evidence that the frequency of reinfections was higher for the B.1.1.7 variant than for pre-existing variants. Reinfection occurrences were more positively correlated with the overall regional rise in cases (Spearman correlation 0·56–0·69 for South East, London, and East of England) than with the regional increase in the proportion of infections with the B.1.1.7 variant (Spearman correlation 0·38–0·56 in the same regions), suggesting B.1.1.7 does not substantially alter the risk of reinfection. We found a multiplicative increase in the Rt of B.1.1.7 by a factor of 1·35 (95% CI 1·02–1·69) relative to pre-existing variants. However, Rt fell below 1 during regional and national lockdowns, even in regions with high proportions of infections with the B.1.1.7 variant. Interpretation The lack of change in symptoms identified in this study indicates that existing testing and surveillance infrastructure do not need to change specifically for the B.1.1.7 variant. In addition, given that there was no apparent increase in the reinfection rate, vaccines are likely to remain effective against the B.1.1.7 variant. Funding Zoe Global, Department of Health (UK), Wellcome Trust, Engineering and Physical Sciences Research Council (UK), National Institute for Health Research (UK), Medical Research Council (UK), Alzheimer's Society

Genomic assessment of quarantine measures to prevent SARS-CoV-2 importation and transmission

Mitigation of SARS-CoV-2 transmission from international travel is a priority. We evaluated the effectiveness of travellers being required to quarantine for 14-days on return to England in Summer 2020. We identified 4,207 travel-related SARS-CoV-2 cases and their contacts, and identified 827 associated SARS-CoV-2 genomes. Overall, quarantine was associated with a lower rate of contacts, and the impact of quarantine was greatest in the 16–20 age-group. 186 SARS-CoV-2 genomes were sufficiently unique to identify travel-related clusters. Fewer genomically-linked cases were observed for index cases who returned from countries with quarantine requirement compared to countries with no quarantine requirement. This difference was explained by fewer importation events per identified genome for these cases, as opposed to fewer onward contacts per case. Overall, our study demonstrates that a 14-day quarantine period reduces, but does not completely eliminate, the onward transmission of imported cases, mainly by dissuading travel to countries with a quarantine requirement