Special Section Introduction: Mass Observation as Method

Since Mass Observation's foundation in 1937, the organisation has played witness to the great and the small events of everyday life during the last eight decades, recording people's opinions, beliefs and experiences, and making them available for researchers to develop new interpretations of British social life. Although the data produced is often messy and unwieldy and apparently contradicts many sociological assumptions about methodological rigour, the Archive is uniquely placed to offer detailed and exceptionally rich accounts of the fibre of everyday life and to reveal the deep complexities of family, personal and intimate life. As Mike Savage notes in Identities and Social Change in Britain since 1940, 'Mass-Observation is the most studied, and arguably the most important, social research institution of the mid-twentieth century' (Savage 2010: 57). He situates this significance in it providing the focus for the emergence of a new intellectual class in late 1930s Britain of people who identified with a social scientific outlook. Until that point in time, the main point of entry into intellectual circles for newly educated classes was through literary culture, which was often implicitly elitist and hierarchical in its attitude to wider society

Patient perspectives of ‘Watch and Wait’ for chronic haematological cancers : Findings from a qualitative study

Purpose: Chronic blood cancers are incurable, and characterised by unpredictable, remitting-relapsing pathways. Management often involves periods of observation prior to treatment (if required), and post-treatment, in an approach known as 'Watch and Wait'. This study aimed to explore patient experiences of Watch and Wait

Chronic Myeloid Leukaemia : A Qualitative Study of Patient and Practitioner Experiences of Managing Treatment

Background. Following the dramatic impact of tyrosine kinase inhibitor (TKI) drugs on chronic myeloid leukaemia (CML) survival, research interest has grown into the long-term impact of treatment, identifying difficulties with medication adherence and ongoing side effects. Qualitative studies suggest the disease has a significant physical and psychological impact on patients, and medication management may be complex. However, only one study worldwide has examined healthcare practitioner (HCP) experiences of managing CML treatment and very little UK qualitative research exists exploring the patient experience. Purpose. Our qualitative study aimed to investigate both patient and HCP experiences of managing CML treatment in the UK. Methods. Patients and HCPs were purposively sampled from within the Haematological Malignancy Research Network (HMRN), a UK population-based patient cohort. Qualitative interviews were carried out with seventeen patients and thirteen HCPs, and data were analysed using thematic analysis. Results. Four themes were developed from interview analysis: “Importance of optimal clinical management,” “Multiple adherence strategies,” “Inconsistent management of adherence,” and “Controlling side effects is complex.” HCPs tended to focus on sometimes complex, clinical decision-making. Patients described various strategies to support adherence and manage side effects, some of which HCPs seemed to be less aware of. Several patients did not discuss non-adherence or side effects with their HCP, who tended to avoid direct enquiry regarding adherence and could be uncertain about adherence advice, whilst relying on medical strategies to manage side effects. Conclusions. Despite HCPs focusing on the medical management of CML treatment, patients may opt to use self-management techniques to control adherence and side effects and can be reluctant to discuss related difficulties. Increased clinic time and clear adherence advice guidance may support such discussion, in addition to adjusting the context of follow-up care through the introduction of shared care with GP services

Pathways of patients with chronic haematological malignancies:a report from the UK’s population-based HMRN

Background Arising in blood and lymph-forming tissues, haematological malignancies (leukaemias, lymphomas and myelomas) are the fifth most common group of cancers. Around 60% are currently incurable and follow a chronic, remitting–relapsing pathway often initially managed by ‘watch & wait’. This involves hospital-based monitoring, followed by treatment if the cancer progresses (which not all do) and then further observation, in a process that may continually repeat. New treatments are constantly emerging, survival is improving and prevalence is rising, but population-based data documenting entire care pathway are sparse. Hence, empirically-based incidence and prevalence estimates about various treatment states (watch and wait, first-line treatment, observation, second-line treatment, etc.) and patterns of healthcare activity are lacking. Likewise, despite complex trajectories, anxiety-provoking watch and wait, and therapies that impede quality of life and incur marked healthcare costs, evidence about patient preferences for information sharing and treatment decisions is scant. Objectives Primary – to generate high-quality, evidence-based information about the care pathways of the general population of patients with chronic haematological malignancies. Secondary – to produce information resources suitable for testing in routine National Health Service practice. Design Population-based cohort of ≈ 8000 patients with chronic haematological malignancies, incorporating five nested work packages, each with its own individual design: (1) exploration of patient experiences: information and treatment decisions; (2) population-based analyses; (3) health economics; (4) development of information resources to support decision-making; and (5) patient well-being and decision-making survey. Setting This programme is predicated on the infrastructure of the United Kingdom’s Haematological Malignancy Research Network (www.hmrn.org); which provides ‘real-world’, robust, generalisable data to inform research and clinical practice, nationally and internationally. Set in Yorkshire and Humberside, the Haematological Malignancy Research Network’s catchment population of ≈ 4 million has a comparable sex, age, urban/rural, and area-based deprivation (Index of Multiple Deprivation, income domain) distribution to the United Kingdom as a whole; and in terms of ethnic diversity the region is centrally ranked, with around 80% of residents identifying as White British, 9% as Asian and 2% as black. Within the Haematological Malignancy Research Network, clinical practice adheres to national guidelines, and all patients with blood cancers are centrally diagnosed (≈ 2500 each year), tracked through their treatment pathways and linked to national databases (deaths, cancer registrations and Hospital Episode Statistics). Linked to the same national databases, the Haematological Malignancy Research Network also contains an age- and sex-matched general-population cohort. Participants Patients aged ≥ 18 years, resident in the study region, and diagnosed with chronic lymphocytic leukaemia, follicular lymphoma or myeloma. Methods Core Haematological Malignancy Research Network data were used to compare the hospital activity of patients with chronic lymphocytic leukaemia, follicular lymphoma and myeloma with that of the general population. Following additional linkages to genetic and clinical data, follicular lymphoma prognostic factors were examined. Two self-administered questionnaires addressing (1) quality of life and well-being and (2) decision-making were iteratively developed, piloted and deployed. Linkage to quality of life, clinical information and Hospital Episode Statistics enabled economic (myeloma) model development. In-depth interviews were conducted with 35 patients (10 alongside relatives). Results Trajectories of ≈ 8000 patients were mapped, and patient-pathway visualisations summarising individual and aggregate information were developed. As expected, patients with chronic blood cancers experienced higher levels of hospital activity than their general population counterparts, the largest effects being for myeloma. Following survey deployment, 3153 patients were recruited across 14 hospitals, 1282 with chronic lymphocytic leukaemia, follicular lymphoma or myeloma. Over half of the questionnaires were completed by patients on watch and wait; the remainder were completed during treatment or post-chemotherapy monitoring. Information gathered, coupled with in-depth interviews, demonstrated patients’ marked anxiety and fluctuating preferences for information sharing and decision-making, contingent on complex, inter-related factors. In turn, prognostic and microsimulation economic models were used to predict individual-level trajectories across multiple treatment lines, examining associated overall survival, costs and quality-adjusted life-years. Limitations Survey mapping to individual care pathways could not be completed because the COVID-19 pandemic delayed clinical data collection. Patients who attended clinics and participated in the survey were more likely than non-attenders to have had first-line chemotherapy, be slightly younger and live in more affluent areas. Conclusions This programme collated high-quality, population-based evidence. Previously lacking, this, coupled with new findings on preferences for information sharing and treatment decisions, provides the foundation for future research. Future work The translation of information accrued into resources suitable for testing in routine NHS practice is key. In this regard, COVID-19 has changed the communication landscape. The visualisations developed by this programme require further refinement/testing using participatory co-design with stakeholder groups. Underpinned by a suitable protocol applied within a single multidisciplinary team setting, prior to further evaluation within/outside the region, such outputs require testing in a cluster-randomised trial. Funding This award was funded by the National Institute for Health and Care Research (NIHR) Programme Grants for Applied Research programme (NIHR award ref: RP-PG-0613-20002) and is published in full in Programme Grants for Applied Research; Vol. 12, No. 5. See the NIHR Funding and Awards website for further award information

Mortality and pulmonary complications in patients undergoing surgery with perioperative SARS-CoV-2 infection: an international cohort study

Background: The impact of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) on postoperative recovery needs to be understood to inform clinical decision making during and after the COVID-19 pandemic. This study reports 30-day mortality and pulmonary complication rates in patients with perioperative SARS-CoV-2 infection. Methods: This international, multicentre, cohort study at 235 hospitals in 24 countries included all patients undergoing surgery who had SARS-CoV-2 infection confirmed within 7 days before or 30 days after surgery. The primary outcome measure was 30-day postoperative mortality and was assessed in all enrolled patients. The main secondary outcome measure was pulmonary complications, defined as pneumonia, acute respiratory distress syndrome, or unexpected postoperative ventilation. Findings: This analysis includes 1128 patients who had surgery between Jan 1 and March 31, 2020, of whom 835 (74·0%) had emergency surgery and 280 (24·8%) had elective surgery. SARS-CoV-2 infection was confirmed preoperatively in 294 (26·1%) patients. 30-day mortality was 23·8% (268 of 1128). Pulmonary complications occurred in 577 (51·2%) of 1128 patients; 30-day mortality in these patients was 38·0% (219 of 577), accounting for 81·7% (219 of 268) of all deaths. In adjusted analyses, 30-day mortality was associated with male sex (odds ratio 1·75 [95% CI 1·28–2·40], p\textless0·0001), age 70 years or older versus younger than 70 years (2·30 [1·65–3·22], p\textless0·0001), American Society of Anesthesiologists grades 3–5 versus grades 1–2 (2·35 [1·57–3·53], p\textless0·0001), malignant versus benign or obstetric diagnosis (1·55 [1·01–2·39], p=0·046), emergency versus elective surgery (1·67 [1·06–2·63], p=0·026), and major versus minor surgery (1·52 [1·01–2·31], p=0·047). Interpretation: Postoperative pulmonary complications occur in half of patients with perioperative SARS-CoV-2 infection and are associated with high mortality. Thresholds for surgery during the COVID-19 pandemic should be higher than during normal practice, particularly in men aged 70 years and older. Consideration should be given for postponing non-urgent procedures and promoting non-operative treatment to delay or avoid the need for surgery. Funding: National Institute for Health Research (NIHR), Association of Coloproctology of Great Britain and Ireland, Bowel and Cancer Research, Bowel Disease Research Foundation, Association of Upper Gastrointestinal Surgeons, British Association of Surgical Oncology, British Gynaecological Cancer Society, European Society of Coloproctology, NIHR Academy, Sarcoma UK, Vascular Society for Great Britain and Ireland, and Yorkshire Cancer Research

Bi-allelic Loss-of-Function CACNA1B Mutations in Progressive Epilepsy-Dyskinesia.

The occurrence of non-epileptic hyperkinetic movements in the context of developmental epileptic encephalopathies is an increasingly recognized phenomenon. Identification of causative mutations provides an important insight into common pathogenic mechanisms that cause both seizures and abnormal motor control. We report bi-allelic loss-of-function CACNA1B variants in six children from three unrelated families whose affected members present with a complex and progressive neurological syndrome. All affected individuals presented with epileptic encephalopathy, severe neurodevelopmental delay (often with regression), and a hyperkinetic movement disorder. Additional neurological features included postnatal microcephaly and hypotonia. Five children died in childhood or adolescence (mean age of death: 9 years), mainly as a result of secondary respiratory complications. CACNA1B encodes the pore-forming subunit of the pre-synaptic neuronal voltage-gated calcium channel Cav2.2/N-type, crucial for SNARE-mediated neurotransmission, particularly in the early postnatal period. Bi-allelic loss-of-function variants in CACNA1B are predicted to cause disruption of Ca2+ influx, leading to impaired synaptic neurotransmission. The resultant effect on neuronal function is likely to be important in the development of involuntary movements and epilepsy. Overall, our findings provide further evidence for the key role of Cav2.2 in normal human neurodevelopment.MAK is funded by an NIHR Research Professorship and receives funding from the Wellcome Trust, Great Ormond Street Children's Hospital Charity, and Rosetrees Trust. E.M. received funding from the Rosetrees Trust (CD-A53) and Great Ormond Street Hospital Children's Charity. K.G. received funding from Temple Street Foundation. A.M. is funded by Great Ormond Street Hospital, the National Institute for Health Research (NIHR), and Biomedical Research Centre. F.L.R. and D.G. are funded by Cambridge Biomedical Research Centre. K.C. and A.S.J. are funded by NIHR Bioresource for Rare Diseases. The DDD Study presents independent research commissioned by the Health Innovation Challenge Fund (grant number HICF-1009-003), a parallel funding partnership between the Wellcome Trust and the Department of Health, and the Wellcome Trust Sanger Institute (grant number WT098051). We acknowledge support from the UK Department of Health via the NIHR comprehensive Biomedical Research Centre award to Guy's and St. Thomas' National Health Service (NHS) Foundation Trust in partnership with King's College London. This research was also supported by the NIHR Great Ormond Street Hospital Biomedical Research Centre. J.H.C. is in receipt of an NIHR Senior Investigator Award. The research team acknowledges the support of the NIHR through the Comprehensive Clinical Research Network. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR, Department of Health, or Wellcome Trust. E.R.M. acknowledges support from NIHR Cambridge Biomedical Research Centre, an NIHR Senior Investigator Award, and the University of Cambridge has received salary support in respect of E.R.M. from the NHS in the East of England through the Clinical Academic Reserve. I.E.S. is supported by the National Health and Medical Research Council of Australia (Program Grant and Practitioner Fellowship)

Damned anecdotes and dangerous confabulations: Mass-Observation as Life History

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Reviewing Mass-Observation: The Archive and its Researchers Thirty Years on

Die um 1930 im Rahmen der "Mass-Observation"-Studien erstellten Dokumente werden seit den frühen siebziger Jahren in einem öffentliches Archiv der University of Sussex zugänglich gemacht. Seit dieser Zeit erfreuen sie sich eines ständig wachsenden Interesses, und zwar sowohl innerhalb akademischer Arbeiten (aus der Kunst- und Sozialgeschichte, der Anthropologie, Psychologie, Soziologie und den Medien-, Kultur- und Literaturwissenschaften) als auch von Seiten einer breiten Öffentlichkeit (z.B. für Film-, Fernseh- und Radioprogamme, von Journalisten, Gemeindearbeitern, Schriftstellern, Künstlern, Fotographen und Dokumentaristen, Lehrern und Schülern). Angesichts der Bedeutung, die hierbei dem gesammelten Material jenseits der ursprünglich vorgesehenen Zwecke zukommt, kann das "Mass-Observation"-Archiv als wichtiges Beispiel dafür erachtet werden, wie sozialwissenschaftliche Daten innerhalb späterer Forschungskontexte eine Neubewertung erfahren, indem neue Forschungsfragen gestellt werden (mitunter sogar innerhalb gänzlich veränderter methodologischer Paradigmen). Der folgende Beitrag beschreibt das Archiv und seine Bestände und die Geschichte der (Wieder-) Verwendung des hier verfügbaren Datenmaterials.The papers resulting from the 1930s social research organisation, "Mass-Observation" were established as a public archive at the University of Sussex in the early 1970s. Since then they have attracted a steadily increasing number of researchers not only from within the academic community (from art history, social history, anthropology, psychology, sociology, media and cultural studies and literature) but also from the wider community (film, TV and radio programme makers, journalists, community workers, oral and local historians, novelists, playwrights and artists, photographers and documentarists, teachers and school students). This more recent use of materials which were originally collected for other purposes at other times has been substantial. As a result, the Mass-Observation Archive can be seen as a prime example of the ways in which social research data can be re-evaluated within new research frameworks, in response to new formulations of research questions, and even within entirely new methodological paradigms. This paper briefly describes the Archive and the history of its (secondary) exploitation.En los primeros años de la década de los 70 en la Universidad de Sussex, se creó un archivo público con los trabajos producidos por la organización "Observación Masiva" ("Mass-Observation"). Desde entonces estos archivos han atraído un número creciente de investigadores, no sólo desde la comunidad académica (de las disciplinas de la historia del arte, la historia social, la antropología, la psicología, la sociología, los estudios de los medios y la cultura y la literatura), sino también de la comunidad en general (creadores de programas para cine, la televisión y la radio, periodistas, fotógrafos, documentalistas, profesores y estudiantes). A pesar de que estos materiales fueron recolectados para otros propósitos, este uso reciente ha sido sustancial. Como resultado, se puede apreciar que el Archivo de Operación – Masiva es un ejemplo de cómo los datos de la investigación social pueden ser re-evaluados para dar respuesta a nuevas preguntas que aparecen dentro de nuevos marcos investigativos, incluso en nuevos paradigmas methodológicos. Este trabajo describe brevemente el Archivo y la historia de su explotación (secundario)