Exploring public attitudes towards data sharing and linkage in health and social care

Introduction The devolvement of health and social care in Greater Manchester, England provides the private and public sectors with a unique opportunity to build comprehensive information sharing agreements. Shared information governance is key to enabling the rapid sharing of data which will underpin our ability to radically transform population health. Objectives and Approach In 2013 the UK Government introduced a data sharing opt-out programme called Care.data. This programme aimed to extract data at GP level and anonymise data which could then be shared amongst those inside and outside the NHS. This programme was greeted with widespread public mistrust and abandoned in 2016. Care.data demonstrated that public concerns can de-rail efforts to improve data sharing. The key objective for this piece of work was to use public engagement activities as a means of identifying and unpicking public concerns about data-linkage and sharing as part of wider efforts to establish a social license in health. Results Discursive responses were analysed using thematic analysis and word frequency analysis. Combining thematic analysis and word frequency analysis helped to unpack the data by facilitating the identification and perceived importance of broad themes and sub-themes. To date, analysis has identified a number of ‘Global Themes’ and 'Sub-themes' which will need to be addressed before we can establish a social license in health and social care with the public: Global Themes related to: • Trust/mistrust • Privacy and confidentiality/breaches of privacy and confidentiality Sub-themes related to: • Security of systems • Rest of the world security • What a third party might do with health data • Data ownership • Health data being used for private and or commercial profit • How others perceive you • Access to future treatment Conclusion/Implications Our deliberative discussions indicated concerns across culture and ethnic groups that data-sharing and linkage might be used to ‘gate-keep’ future access to treatment. Given that congruent social licenses are built on legitimacy, credibility and trust further work is required to allay public fears regarding future access to treatment

Acceptability and feasibility of an isometric resistance exercise program for abdominal cancer surgery: An embedded qualitative study

Although it is recognized in the early stages of cancer recovery that changes in lifestyle including increases in physical activity improves physical function, there are no clear findings whether low versus moderate intensity activity or home or gym exercise offer optimal benefit. Isometric-resistance exercises can be carried out with very little equipment and space and can be performed while patients are bed-bound in hospital or at home. This embedded qualitative study, based in an English hospital trust providing specialist cancer care, was undertaken as a component of a feasibility trial to evaluate the acceptability and feasibility of an isometric-resistance exercise program and explore the suitability of functional assessments by drawing from the experiences of abdominal cancer patients following surgery. Telephone interviews were undertaken with 7 participants in the intervention group, and 8 interviews with the usual care group (n¼ 15). The gender composition consisted of 11 females and 4 males. Participants’ ages ranged from 27 to 84 (M¼ 60.07, SD ¼ 15.40). Interviews were conducted between August 2017 and May 2018, with audio files digitally recorded and data coded using thematic framework analysis. Our results show that blinding to intervention or usual care was a challenge, participants felt the intervention was safe and suitable aided by the assistance of a research nurse, yet, found the self-completion questionnaire tools hard to complete. Our study provides an insight of trial processes, participants’ adherence and completion of exercise interventions, and informs the design and conduct of larger RCTs based on the experiences of abdominal cancer surgery patients

Effects of pre- and post-operative resistance exercise interventions on recovery of physical function in patients undergoing abdominal surgery for cancer: A systematic review of randomised controlled trials

Objective: To systematically review the effects of pre- and post-operative resistance exercise training on the recovery of physical function in patients undergoing abdominal surgery for cancer. Data sources: A systematic review of English articles using Medline, PEDro, Cinahl and The Cochrane Library electronic databases was undertaken. Eligibility criteria for selecting studies: Studies were included if they used a randomised, quasi-randomised, or controlled trial study design and compared the effects of a muscle-strengthening exercise intervention (+/- other therapy) with a comparative non-exercise group; involved adult participants (≥18 years) who had elected to undergo abdominal surgery for cancer; and used muscle strength, physical function, self-reported functional ability, range of motion and/or a performance-based test as an outcome measure. Results: Following screening of titles and abstracts of the 588 publications retrieved from the initial search, 24 studies met the inclusion criteria and were accessed for review of the full-text version of the article and 2 eligible met the inclusion criteria and were included in the review. One exercise programme was undertaken pre-operatively and the other post-operatively, until discharge from hospital. There were no differences between groups in either study. Conclusion: The only two studies designed to determine whether pre- or post-operative resistance muscle-strengthening exercise programmes improved or negatively affected physical function outcomes in patients undergoing abdominal surgery for cancer provide inconclusive results. The exercise interventions of the included studies were performed for 5 and 8 session respectively

Barriers and enablers of type 2 diabetes self-management in people with severe mental illness

Background People with diabetes and severe mental illness (SMI) experience poorer outcomes than those with diabetes alone. To improve outcomes, it is necessary to understand the difficulties that people with SMI experience in managing their diabetes. Aims To identify barriers and enablers to effective diabetes self-management experienced by people with SMI and type 2 diabetes. Method Qualitative methodology using semi-structured interviews was employed. Development of the interview topic guide and analysis of the transcripts was informed by the Theoretical Domains Framework (TDF) for behaviour change, which consists of fourteen theoretical domains that have been found to influence behaviour. Results Fourteen people with SMI and type 2 diabetes took part in the study. Participants considered diabetes self-management to be important, were aware of the risks of poor diabetes control but struggled to follow recommended advice, particularly if their mental health was poor. Support from family and health professionals was considered an important enabler of diabetes self-management. Conclusions New approaches are required to support diabetes self-management in people with SMI. This study identified some of the important domains that may be targeted in new interventions

Propaganda in an Age of Algorithmic Personalization: Expanding Literacy Research and Practice

In this commentary, the author considers the rise of algorithmic personalization and the power of propaganda as they shift the dynamic landscape of 21st‐century literacy research and practice. Algorithmic personalization uses data from the behaviors, beliefs, interests, and emotions of the target audience to provide filtered digital content, targeted advertising, and differential product pricing to online users. As persuasive genres, advertising and propaganda may demand different types of reading practices than texts whose purpose is primarily informational or argumentative. Understanding the propaganda function of algorithmic personalization may lead to a deeper consideration of texts that activate emotion and tap into audience values for aesthetic, commercial, and political purposes. Increased attention to algorithmic personalization, propaganda, and persuasion in the context of K–12 literacy education may also help people cope with sponsored content, bots, and other forms of propaganda and persuasion that now circulate online

Atlanto-axial rotatory fixation in a girl with Spondylocarpotarsal synostosis syndrome

We report a 15-year-old girl who presented with spinal malsegmentation, associated with other skeletal anomalies. The spinal malsegmentation was subsequently discovered to be part of the spondylocarpotarsal synostosis syndrome. In addition, a distinctive craniocervical malformation was identified, which included atlanto-axial rotatory fixation. The clinical and the radiographic findings are described, and we emphasise the importance of computerised tomography to characterize the craniocervical malformation complex. To the best of our knowledge, this is the first clinical report of a child with spondylocarpotarsal synostosis associated with atlanto-axial rotatory fixation

Immunomodulatory role of Keratin 76 in oral and gastric cancer

Keratin 76 (Krt76) is an epithelial differentiation marker that is downregulated in oral squamous cell carcinomas, correlating with poor prognosis. Here the authors show that genetic ablation of Krt76 in a mouse model results in increased susceptibility to carcinogenesis via enhanced accumulation of Tregs

Malaria in HIV-Infected Children Receiving HIV Protease-Inhibitor- Compared with Non-Nucleoside Reverse Transcriptase Inhibitor-Based Antiretroviral Therapy, IMPAACT P1068s, Substudy to P1060

HIV and malaria geographically overlap. HIV protease inhibitors kill malaria parasites in vitro and in vivo, but further evaluation in clinical studies is needed