Health informatics can avoid committing symbolic violence by recognizing and supporting generic decision-making competencies

‘Symbolic violence’ is committed, however well-intentionally, by the imposition of particular conceptualizations of what information, in what form and quality, is needed in order to make an ‘informed choice’ and hence – by questionable segue - a high quality decision. The social and cultural forms of relevant cognitive capital possessed by those who fail, because of their low general literacy, professionally-set knowledge tests of functional health literacy, are being ignored. Failing to recognise and exploit a particular form of functional decision literacy, in fact leads to symbolic violence being experienced by individuals at any and all levels of general literacy. It leads many to adopt the same range of avoidant and other undesirable strategies within healthcare situations observed in those of low basic literacy. The alternative response we propose exploits the alternative generic decision literacy which comes in the form of the ability to access and use the decision-relevant resources provided for many consumer services and products on comparison websites and magazines. The methodology is the simple form of multi-criteria analysis in which the products\u27 ratings on multiple criteria are combined with criterion weights (supplied by the site) to produce scores and ‘best buys’ and ‘good value for money’ verdicts. Our alternative approach extends this approach to healthcare options and permits the incorporation of personal criterion weights in furtherance of person-centred care. Health informaticians, especially those in the decision support field, should build on this widespread generic competence. The fact that it is generic, far from implying context insensitivity, can be seen as a necessary basis for achieving context-sensitivity and sensitivisation at the level of the individual person as they experience a lifelong sequence of healthcare decisions

Communicating About Mortality in Health Decision Support: ‘What and Why and When, and How and Where and Who’

The Covid-19 pandemic has only accelerated the need and desire to deal more openly with mortality, because the effect on survival is central to the comprehensive assessment of harms and benefits needed to meet a ‘reasonable patient’ legal standard. Taking the view that this requirement is best met through a multi-criterial decision support tool, we offer our preferred answers to the questions of What should be communicated about mortality in the tool, and How, given preferred answers to Who for, Who by, Why, When, and Where. Summary measures, including unrestricted Life Expectancy and Restricted Mean Survival Time are found to be reductionist and relative, and not as easy to understand and communicate as often asserted. Full lifetime absolute survival curves should be presented, even if they cannot be ‘evidence-based’ beyond trial follow-up limits, along with equivalent measures for other criteria in the (necessarily) multi-criterial decision. A decision support tool should relieve the reasonable person of the resulting calculation burden.</jats:p

“Standing out like a sore thumb”: exploring socio-cultural influences on adherence to cardiac rehabilitation

Exercise-based rehabilitation forms a key part of the UK National Health Service patient-care pathway for cardiac rehabilitation (CR). Only around half of all eligible patients attend core CR, however, with social inequalities affecting participation. Few qualitative studies have explored in-depth the key factors influencing engagement with CR, specifically from a sociological theoretical, and ethnographic perspective. Utilising an ethnographic approach allowed us to get a sense of the embodied experiences of 10 participants attending or declining core CR, together with a further seven family members/significant others. This provided in-depth appreciation of participants’ lifeworld contexts as key influences on CR participation. The article draws on these qualitative data and focuses on 1) participants’ initial thoughts about CR; and 2) navigating the field of CR, analysed via thematic analysis. We utilise a Bourdieusian theoretical perspective to theorise the findings, including salient socio-cultural factors influencing attendance/non-attendance and (non)adherence. The article findings highlight how perceptions of CR and the ability to navigate the field are strongly influenced by habitus and capital, and how personal biographies and socio-material conditions affect adherence to CR programmes. The study provides original insights into embodied experiences of exercise-based CR, and novel understandings of the reasons for drop-out/poor adherence, theorised from a Bourdieusian perspective

Socio-cultural influences on exercise and health along the cardiac patient journey: a Bourdieusian perspective

In the UK, there are thousands of cardiac events every year, which include Myocardial Infarctions (MIs), heart surgery, device insertions and heart failure. The journey of each cardiac patient is likely to be influenced by many factors and follows three main temporal stages: symptom recognition and treatment, the offer of Cardiac Rehabilitation, and recovery. Symptoms may develop rapidly or more gradually. How one approaches these symptoms and the decisions made about health care can be highly personal and contingent on socio-cultural influences. Cardiac Rehabilitation will typically be offered as part of the journey. Levels of patient participation in Cardiac Rehabilitation in the UK, which is exercise-based, have been sub-optimal for many years. This relates not only to overall participation, but also specifically to numbers of women attending, and to those from deprived areas. Research examines inputs into, outputs and outcomes from Cardiac Rehabilitation, but to date, scant sociological attention has been given to the lived experience of the cardiac patient journey. Given that targets and initiatives have failed to instigate significant change in attendance rates at Cardiac Rehabilitation programmes, it is important to investigate in-depth some of the socio-cultural factors shaping and influencing (non)participation. Further, through the exploration of how individuals navigate the recovery stage following a cardiac event, insight can be gained into the complexities of ‘getting on with life’ following serious ill-health. The theoretical framework offered by Pierre Bourdieu provides a powerful way of illuminating several key aspects in understanding socio-cultural influences on exercise and health, and health care decision making throughout the cardiac patient journey. This includes recognition of both structure and agency, and how the two may interact in the social world, guiding an individual’s chances and choices along the cardiac patient journey. ii Ethnographically inspired fieldwork was conducted over a six-month period in the UK, during which, participant observations, repeat semi-structured interviews, and reflexive journaling were utilised. Reflexive thematic analysis subsequently enabled six key themes to be identified. These themes are discussed in three sections. The first explores the approach to symptoms, examining the influence of the habitus’ work, and how capital has been accumulated and deployed within the field of health care. The second examines Cardiac Rehabilitation (non)participation, noting how dispositional inclinations help shape the formation of practice, and thus how one may approach the offer of rehabilitation, and whether accessing this field is commensurate with the habitus. The third appraises the recovery stage and considers the corporeal and psychosocial impact of the cardiac event and how social actors might utilise their capital resources to renegotiate embodiment. The study adds to the existing literature by illuminating some of the socio-cultural complexities associated with: health care decision making when experiencing cardiac symptoms, exercise experience in uptake of and adherence to Cardiac Rehabilitation, and the process of recovery. Most notably, participants’ material conditions and personal biography, and the influence of other people, were found to serve to constrain or enable the navigation of fields, such as health care and Cardiac Rehabilitation

pHealth 2021. Proc. of the 18th Internat. Conf. on Wearable Micro and Nano Technologies for Personalised Health, 8-10 November 2021, Genoa, Italy

Smart mobile systems – microsystems, smart textiles, smart implants, sensor-controlled medical devices – together with related body, local and wide-area networks up to cloud services, have become important enablers for telemedicine and the next generation of healthcare services. The multilateral benefits of pHealth technologies offer enormous potential for all stakeholder communities, not only in terms of improvements in medical quality and industrial competitiveness, but also for the management of healthcare costs and, last but not least, the improvement of patient experience. This book presents the proceedings of pHealth 2021, the 18th in a series of conferences on wearable micro and nano technologies for personalized health with personal health management systems, hosted by the University of Genoa, Italy, and held as an online event from 8 – 10 November 2021. The conference focused on digital health ecosystems in the transformation of healthcare towards personalized, participative, preventive, predictive precision medicine (5P medicine). The book contains 46 peer-reviewed papers (1 keynote, 5 invited papers, 33 full papers, and 7 poster papers). Subjects covered include the deployment of mobile technologies, micro-nano-bio smart systems, bio-data management and analytics, autonomous and intelligent systems, the Health Internet of Things (HIoT), as well as potential risks for security and privacy, and the motivation and empowerment of patients in care processes. Providing an overview of current advances in personalized health and health management, the book will be of interest to all those working in the field of healthcare today