Our Digital Legacy: an Archival Perspective

Our digital memories are threatened by archival hubris, technical misdirection, and simplistic application of rules to protect privacy rights. The obsession with the technical challenge of digital preservation has blinded much of the archival community to the challenges, created by the digital transition, to the other core principles of archival science - namely, appraisal (what to keep), sensitivity review (identifying material that cannot yet be disclosed for ethical or legal reasons) and access. The essay will draw on the considerations of appraisal and sensitivity review to project a vision of some aspects of access to the Digital Archive. This essay will argue that only by careful scrutiny of these three challenges and the introduction of appropriate practices and procedures will it be possible to prevent the precautionary closure of digital memories for long periods or, worse still, their destruction. We must ensure that our digital memories can be captured, kept, recalled and remain faithful to the events and circumstances that created them

Towards the Development of a Test Corpus of Digital Objects for the Evaluation of File Format Identification Tools and Signatures

The digital preservation community currently utilises a number of tools and automated processes to identify and validate digital objects. The identification of digital objects is a vital first step in their long-term preservation, but the results returned by tools used for this purpose are lacking in transparency, and are not easily tested or verified. This paper suggests that a test corpus of digital objects is one way of providing this verification and validation, ultimately improving trust in the tools, and providing further stimulus to their development. Issues to be considered are outlined, and attention is drawn to particular examples of existing digital corpora which could conceivably provide a useable framework or starting point for our own communities needs. This paper does not seek to answer all questions in this area, but merely attempts to set out areas for consideration in any next step that is taken

Image-based consensus molecular subtyping in rectal cancer biopsies and response to neoadjuvant chemoradiotherapy

The development of deep learning (DL) models to predict the consensus molecular subtypes (CMS) from histopathology images (imCMS) is a promising and cost-effective strategy to support patient stratification. Here, we investigate whether imCMS calls generated from whole slide histopathology images (WSIs) of rectal cancer (RC) pre-treatment biopsies are associated with pathological complete response (pCR) to neoadjuvant long course chemoradiotherapy (LCRT) with single agent fluoropyrimidine. DL models were trained to classify WSIs of colorectal cancers stained with hematoxylin and eosin into one of the four CMS classes using a multi-centric dataset of resection and biopsy specimens (n = 1057 WSIs) with paired transcriptional data. Classifiers were tested on a held out RC biopsy cohort (ARISTOTLE) and correlated with pCR to LCRT in an independent dataset merging two RC cohorts (ARISTOTLE, n = 114 and SALZBURG, n = 55 patients). DL models predicted CMS with high classification performance in multiple comparative analyses. In the independent cohorts (ARISTOTLE, SALZBURG), cases with WSIs classified as imCMS1 had a significantly higher likelihood of achieving pCR (OR = 2.69, 95% CI 1.01–7.17, p = 0.048). Conversely, imCMS4 was associated with lack of pCR (OR = 0.25, 95% CI 0.07–0.88, p = 0.031). Classification maps demonstrated pathologist-interpretable associations with high stromal content in imCMS4 cases, associated with poor outcome. No significant association was found in imCMS2 or imCMS3. imCMS classification of pre-treatment biopsies is a fast and inexpensive solution to identify patient groups that could benefit from neoadjuvant LCRT. The significant associations between imCMS1/imCMS4 with pCR suggest the existence of predictive morphological features that could enhance standard pathological assessment

Establishing a large prospective clinical cohort in people with head and neck cancer as a biomedical resource: head and neck 5000

BACKGROUND: Head and neck cancer is an important cause of ill health. Survival appears to be improving but the reasons for this are unclear. They could include evolving aetiology, modifications in care, improvements in treatment or changes in lifestyle behaviour. Observational studies are required to explore survival trends and identify outcome predictors. METHODS: We are identifying people with a new diagnosis of head and neck cancer. We obtain consent that includes agreement to collect longitudinal data, store samples and record linkage. Prior to treatment we give participants three questionnaires on health and lifestyle, quality of life and sexual history. We collect blood and saliva samples, complete a clinical data capture form and request a formalin fixed tissue sample. At four and twelve months we complete further data capture forms and send participants further quality of life questionnaires. DISCUSSION: This large clinical cohort of people with head and neck cancer brings together clinical data, patient-reported outcomes and biological samples in a single co-ordinated resource for translational and prognostic research

Radical surgery versus organ preservation via short-course radiotherapy followed by transanal endoscopic microsurgery for early-stage rectal cancer (TREC): a randomised, open-label feasibility study

Background: Radical surgery via total mesorectal excision might not be the optimal first-line treatment for early-stage rectal cancer. An organ-preserving strategy with selective total mesorectal excision could reduce the adverse effects of treatment without substantially compromising oncological outcomes. We investigated the feasibility of recruiting patients to a randomised trial comparing an organ-preserving strategy with total mesorectal excision. Methods: TREC was a randomised, open-label feasibility study done at 21 tertiary referral centres in the UK. Eligible participants were aged 18 years or older with rectal adenocarcinoma, staged T2 or lower, with a maximum diameter of 30 mm or less; patients with lymph node involvement or metastases were excluded. Patients were randomly allocated (1:1) by use of a computer-based randomisation service to undergo organ preservation with short-course radiotherapy followed by transanal endoscopic microsurgery after 8–10 weeks, or total mesorectal excision. Where the transanal endoscopic microsurgery specimen showed histopathological features associated with an increased risk of local recurrence, patients were considered for planned early conversion to total mesorectal excision. A non-randomised prospective registry captured patients for whom randomisation was considered inappropriate, because of a strong clinical indication for one treatment group. The primary endpoint was cumulative randomisation at 12, 18, and 24 months. Secondary outcomes evaluated safety, efficacy, and health-related quality of life assessed with the European Organisation for Research and Treatment of Cancer (EORTC) QLQ C30 and CR29 in the intention-to-treat population. This trial is registered with the ISRCTN Registry, ISRCTN14422743. Findings: Between Feb 22, 2012, and Dec 19, 2014, 55 patients were randomly assigned at 15 sites; 27 to organ preservation and 28 to radical surgery. Cumulatively, 18 patients had been randomly assigned at 12 months, 31 at 18 months, and 39 at 24 months. No patients died within 30 days of initial treatment, but one patient randomly assigned to organ preservation died within 6 months following conversion to total mesorectal excision with anastomotic leakage. Eight (30%) of 27 patients randomly assigned to organ preservation were converted to total mesorectal excision. Serious adverse events were reported in four (15%) of 27 patients randomly assigned to organ preservation versus 11 (39%) of 28 randomly assigned to total mesorectal excision (p=0·04, χ2 test). Serious adverse events associated with organ preservation were most commonly due to rectal bleeding or pain following transanal endoscopic microsurgery (reported in three cases). Radical total mesorectal excision was associated with medical and surgical complications including anastomotic leakage (two patients), kidney injury (two patients), cardiac arrest (one patient), and pneumonia (two patients). Histopathological features that would be considered to be associated with increased risk of tumour recurrence if observed after transanal endoscopic microsurgery alone were present in 16 (59%) of 27 patients randomly assigned to organ preservation, versus 24 (86%) of 28 randomly assigned to total mesorectal excision (p=0·03, χ2 test). Eight (30%) of 27 patients assigned to organ preservation achieved a complete response to radiotherapy. Patients who were randomly assigned to organ preservation showed improvements in patient-reported bowel toxicities and quality of life and function scores in multiple items compared to those who were randomly assigned to total mesorectal excision, which were sustained over 36 months’ follow-up. The non-randomised registry comprised 61 patients who underwent organ preservation and seven who underwent radical surgery. Non-randomised patients who underwent organ preservation were older than randomised patients and more likely to have life-limiting comorbidities. Serious adverse events occurred in ten (16%) of 61 non-randomised patients who underwent organ preservation versus one (14%) of seven who underwent total mesorectal excision. 24 (39%) of 61 non-randomised patients who underwent organ preservation had high-risk histopathological features, while 25 (41%) of 61 achieved a complete response. Overall, organ preservation was achieved in 19 (70%) of 27 randomised patients and 56 (92%) of 61 non-randomised patients. Interpretation: Short-course radiotherapy followed by transanal endoscopic microsurgery achieves high levels of organ preservation, with relatively low morbidity and indications of improved quality of life. These data support the use of organ preservation for patients considered unsuitable for primary total mesorectal excision due to the short-term risks associated with this surgery, and support further evaluation of short-course radiotherapy to achieve organ preservation in patients considered fit for total mesorectal excision. Larger randomised studies, such as the ongoing STAR-TREC study, are needed to more precisely determine oncological outcomes following different organ preservation treatment schedules. Funding: Cancer Research UK

Our Digital Legacy: an Archival Perspective

Our digital memories are threatened by archival hubris, technical misdirection, and simplistic application of rules to protect privacy rights. The obsession with the technical challenge of digital preservation has blinded much of the archival community to the challenges, created by the digital transition, to the other core principles of archival science - namely, appraisal (what to keep), sensitivity review (identifying material that cannot yet be disclosed for ethical or legal reasons) and access. The essay will draw on the considerations of appraisal and sensitivity review to project a vision of some aspects of access to the Digital Archive. This essay will argue that only by careful scrutiny of these three challenges and the introduction of appropriate practices and procedures will it be possible to prevent the precautionary closure of digital memories for long periods or, worse still, their destruction. We must ensure that our digital memories can be captured, kept, recalled and remain faithful to the events and circumstances that created them

Understanding male carers: masculinity caring and age

Research on carers has shown that, whilst there are often significant differences between men and women in terms of activity and intensity within filial and sibling caring relationships, the respective contributions ofmale and female spousal carers are very similar. Nevertheless, despite feminist considerations of the informal caring that men do, the qualitative experience ofmale carers has not received the same in-depth examination as that offemale carers. This thesis explores the way in which thirty men, identified as carers for their spouse, construct their understanding ofcaring and masculinity. The influence ofageing and retirement in this process are also considered. Fifty-nine qualitative interviews were gathered and analysed using feminist approaches -premised on the co-procluction of knowledge. The theoretical framework of the study prioritised the agency ofindividual male carers, albeit constrained by material realities of an ageing body, and retirement. The thesis offers a new framework for understanding the way men undertake informal caring activities for their spouse and the emotional as well as practical significance ofinformal caring for them. An important aspect ofthe framework is that it describes how men, who begin to care for their spouse informally, often do so without an awareness ofneed and the practical caring skills they require to care holistically: Older men, however, particularly when they have experienced their own health problems, show greater responsiveness to their wife, enabling a more holistic caring relationship to develop. The framework also shows how this transition is influenced by male carers' interaction with health care professionals, support groups, family, and friends. Finally, the study points to potential topics for future research, particularly the relationship between masculinity, ageing and life course. It also confirms the conclusions ofrecent theoretical research on men and masculinity that suggests the importance oflooking at men's everyday practices, and not just focussing on men's hegemonic behaviours, because after all, men do not always behave in hegemonic ways, but men are always gendered.EThOS - Electronic Theses Online ServiceGBUnited Kingdo

Understanding male carers: masculinity caring and age

Research on carers has shown that, whilst there are often significant differences between men and women in terms of activity and intensity within filial and sibling caring relationships, the respective contributions ofmale and female spousal carers are very similar. Nevertheless, despite feminist considerations of the informal caring that men do, the qualitative experience ofmale carers has not received the same in-depth examination as that offemale carers. This thesis explores the way in which thirty men, identified as carers for their spouse, construct their understanding ofcaring and masculinity. The influence ofageing and retirement in this process are also considered. Fifty-nine qualitative interviews were gathered and analysed using feminist approaches -premised on the co-procluction of knowledge. The theoretical framework of the study prioritised the agency ofindividual male carers, albeit constrained by material realities of an ageing body, and retirement. The thesis offers a new framework for understanding the way men undertake informal caring activities for their spouse and the emotional as well as practical significance ofinformal caring for them. An important aspect ofthe framework is that it describes how men, who begin to care for their spouse informally, often do so without an awareness ofneed and the practical caring skills they require to care holistically: Older men, however, particularly when they have experienced their own health problems, show greater responsiveness to their wife, enabling a more holistic caring relationship to develop. The framework also shows how this transition is influenced by male carers' interaction with health care professionals, support groups, family, and friends. Finally, the study points to potential topics for future research, particularly the relationship between masculinity, ageing and life course. It also confirms the conclusions ofrecent theoretical research on men and masculinity that suggests the importance oflooking at men's everyday practices, and not just focussing on men's hegemonic behaviours, because after all, men do not always behave in hegemonic ways, but men are always gendered.EThOS - Electronic Theses Online ServiceGBUnited Kingdo

Safe Havens for Archives At Risk - Guidelines, Principles and Approaches

Poste

Safe Havens For Archives At Risk Guidelines, Principles and Approaches - iPRES 2019 Amsterdam

The main aim of our poster is to raise awareness among the Digital Preservation community of the need for, and particular considerations of, (digital) Safe Havens For Archives at Risk. The document “Guiding Principles for Safe havens for archives at risk” [1], has been recently published and endorsed by the International Council of Archives [2]. The authors are involved in continuing work to develop detailed commentaries on each of the Guiding Principles. While the guiding principles are format neutral, we highlight specific digital considerations that are emerging in development of the commentaries