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A policy of surveillance which interferes with the fundamental right to a private life requires credible justification and a supportive evidence base. The authority for such interference should be clearly detailed in law, overseen by a transparent process and not left to the vagaries of administrative discretion. If a state surveils those it governs and claims the interference to be in the public interest, then the evidence base on which that claim stands and the operative conception of public interest should be subject to critical examination. Unfortunately, there is an inconsistency in the regulatory burden associated with access to confidential patient information for non-health-related surveillance purposes and access for health-related surveillance or research purposes. This inconsistency represents a systemic weakness to inform or challenge an evidence-based policy of non-health-related surveillance. This inconsistency is unjustified and undermines the qualities recognised to be necessary to maintain a trustworthy confidential public health service. Taking the withdrawn Memorandum of Understanding (MoU) between NHS Digital and the Home Office as a worked example, this chapter demonstrates how the capacity of the law to constrain the arbitrary or unwarranted exercise of power through judicial review is not sufficient to level the playing field. The authors recommend ‘levelling up’ in procedural oversight, and adopting independent mechanisms equivalent to those adopted for establishing the operative conceptions of public interest in the context of health research to non-health-related surveillance purposes.

Prisoners have poorer oral health than the general population. Good oral health is essential for both social and physical well-being. For prisoners, poor oral health is also related to drug use after release, whereas good oral health is related to successful reintegration into society. The purpose of this study was twofold: to examine the effect of an intervention based on motivational interviewing (MI) on prisoners’ oral health-related behavior and to assess if the intervention is a good fit for this population.

In total, 16 prisoners in a Norwegian prison were offered a brief MI-based intervention focusing on changing their oral health-related behavior. An oral examination was also performed and the prisoners received a small package containing oral hygiene aids. Two weeks later, a second oral examination and a semi-structured interview were conducted to explore the effect of the intervention and examine the prisoners’ responses to the intervention. Qualitative data analyzes were guided by thematic analysis.

The findings indicate that the intervention had positive effects on both the prisoners’ motivation to use oral health-related behavior and their performance of oral health-related behavior. The findings also indicate that the intervention was well adapted to the target population.

This is one of the first studies that explore the effect of an intervention in improving prisoners’ oral health and bridges a knowledge gap in the literature. The findings may increase the understanding of how dental services should be organized and offered to provide dental health care to this vulnerable group.

Considerably diminished quality of life (QoL) is observed in patients with visual field defects after lesions affecting the visual pathway. But little is known to what extent vision-and health-related QoL impairments are associated with psychological distress. In 24 patients with chronic visual field defects (mean age=56.17±12.36) the National Eye Institute-visual functioning questionnaire (NEI-VFQ) for vision-related QoL, the Short Form Health Survey-36 (SF-36) for generic QoL and the revised Symptom-Checklist (SCL-90-R) were administered. Cases with clinically relevant SCL-90-R symptoms were defined. Demographic, QoL and visual field parameters were correlated with SCL-90-R scales. About 40% of the investigated patients met the criteria for the definition of psychiatric caseness. 8/12 NEI-VFQ scales correlated significantly with SCL-90-R phobic anxiety (r-range -0.41 to -0.64, P<0.05), 5/12 NEI-VFQ scales correlated with SCL-90-R interpersonal sensitivity (-0.43 to -0.50), and 3/12 with SCL-90-R depression (-0.51 to -0.57) and obsessive-compulsiveness (-0.41 to -0.43). In contrast, only 1/8 SF-36 scales correlated significantly with SCL-90-R depression, phobic anxiety and interpersonal sensitivity (-0.41 to -0.54). No substantial correlations were observed between visual field parameters and SCL-90-R scales. Significant correlations of SCL-90-R with NEI-VFQ but not with SF-36 suggest that self-rated psychological distress is the result of diminished vision-related QoL as a consequence of visual field loss. The extent of visual field loss itself did not influence the rating of psychological distress directly, since SCL-90-R symptoms were only reported when diminished vision-related QoL was present. Patients with reduced vision-related QoL due to persisting visual field defects should therefore be offered additional neuropsychological rehabilitation and supportive psychotherapeutic interventions even years after the lesion.

Medication adherence contributes significantly to symptom remission, recovery and wellbeing in mental illnesses. We evaluated how medication adherence correlates with clinico-demographic factors and quality of life (QoL) in a sample of Nigerians with schizophrenia. This descriptive cross-sectional study involved 160 randomly selected participants with confirmed diagnosis of schizophrenia based on MINI International Neuropsychiatric Interview. Data on socio-demographic and clinical characteristics of participants were collected with a questionnaire. Medication adherence was assessed with Morisky Medication Adherence Questionnaire, and participants completed the World Health Organization Quality of Life Scale-BREF. The mean age of participants was 38.54 (±11.30) years, and all the participants were on antipsychotics, but only 45% were adherent to their medication. Out of all the participants, 45 (28.2%) considered their overall QoL to be good, 97 (60.6%) considered theirs to be fair, while 18 (11.2%) reported poor QoL. Medication non-adherence correlated negatively with good QoL across multiple dimensions including overall QoL (r=−0.175), health satisfaction (r=-0.161), physical (r=-0.186) and psychological domain (r=-0.175). Again, participant's age (r=−0.190) and age of onset of illness (r=-0.172) correlated negatively with medication non-adherence, and a trend towards relapse delay with medication adherence was also observed (r=-0.155). The effect size of these correlations were however small. Our findings suggest a link between medication adherence and QoL in schizophrenia, such that strategy that addresses medication non-adherence and its determinants may have potential benefits on wellbeing. Further hypotheses-driven studies are desirable.

The objective of this study was to examine the causal relationships among sex, social support, disease severity, symptoms, physical activity, general health perception and health-related quality of life (HRQOL) in Thai adolescents with congenital heart disease (CHD).

A cross-sectional study was conducted using convenience sampling to recruit 200 Thai adolescents with CHD aged between 13 and18 years from four tertiary university hospitals in Bangkok. Interview method and self-administered questionnaires were used for data collection held between November 2018 and February 2019. Data were analyzed using path analysis to test the hypothesized model of the relationships.

The causal model of HRQOL revealed a good fit with the data. This model of relationship could explain 48% of the variances in HRQOL. Only direct effects of disease severity, symptoms and social support on HRQOL were found while indirect effects were not.

Due to the lack of study focusing on factors influencing HRQOL in Thai adolescents with CHD, this empirical study provides the evidence in Thai literature. The modifiable influencing factors for HRQOL found in this study can be manipulated through psycho-educational intervention given to the adolescents and significant others, especially parents, to help increase quality of life in adolescents with CHD.

Cybersecurity in healthcare has become an urgent matter in recent years due to various malicious attacks on hospitals and other parts of the healthcare infrastructure. The purpose of this paper is to provide an outline of how core values of the health systems, such as the principles of biomedical ethics, are in a supportive or conflicting relation to cybersecurity.

This paper claims that it is possible to map the desiderata relevant to cybersecurity onto the four principles of medical ethics, i.e. beneficence, non-maleficence, autonomy and justice, and explore value conflicts in that way.

With respect to the question of how these principles should be balanced, there are reasons to think that the priority of autonomy relative to beneficence and non-maleficence in contemporary medical ethics could be extended to value conflicts in health-related cybersecurity.

However, the tension between autonomy and justice, which relates to the desideratum of usability of information and communication technology systems, cannot be ignored even if one assumes that respect for autonomy should take priority over other moral concerns.

In terms of value conflicts, most discussions in healthcare deal with the conflict of balancing efficiency and privacy given the sensible nature of health information. In this paper, the authors provide a broader and more detailed outline.

Epilepsy is a chronic neurological disorder that can have profound physical, social and psychological consequences. We aimed to assess the clinical predictors of quality of life of people with epilepsy. We recruited 31 patients suffering from epilepsy in this cross-sectional study. Their clinical profile was recorded. Quality Of Life in Epilepsy (QOLIE-31) was used to assess quality of life of our patients. Depression was screened by Neurological Disorders Depression Inventory in Epilepsy (NDDI-E). Among all the clinical variables, only seizure frequency significantly correlated with seizure worry (P=0.002), emotional well-being (P=0.026) and social functions (P=0.013) subscales of QOLIE-31. NDDIE score showed a significant negative correlation with all the subscales of QOLIE-31 except medication effects (P=0.993). A significant positive correlation was also noted between seizure frequency and NDDI-E score (r=0.417, P=0.020). Seizure frequency and depression are the most important predictors of quality of life in epilepsy patients. The management of patients with epilepsy should not only be aimed at just preventing seizures but the treating clinicians should also be cognizant about depression which itself can significantly affect the quality of life of patients.

The proliferation of (big) data provides numerous opportunities for service advances in practice, yet research on using data to advance service is at a nascent stage in the literature. Many studies have discussed phenomenological benefits of data to service. However, limited research describes managerial issues behind such benefits, although a holistic understanding of the issues is essential in using data to advance service in practice and provides a basis for future research. The purpose of this paper is to address this research gap.

“Using data to advance service” is about change in organizations. Thus, this study uses action research methods of creating real change in organizations together with practitioners, thereby adding to scientific knowledge about practice. The authors participated in five service design projects with industry and government that used different data sets to design new services.

Drawing on lessons learned from the five projects, this study empirically identifies 11 managerial issues that should be considered in data-use for advancing service. In addition, by integrating the issues and relevant literature, this study offers theoretical implications for future research.

“Using data to advance service” is a research topic that emerged originally from practice. Action research or case studies on this topic are valuable in understanding practice and in identifying research priorities by discovering the gap between theory and practice. This study used action research over many years to observe real-world challenges and to make academic research relevant to the challenges. The authors believe that the empirical findings will help improve service practices of data-use and stimulate future research.

In this article we aim to understand how the network formed by fitness tracking devices and associated apps as a subset of the broader health-related Internet of things is capable of spreading information.

The authors used a combination of a content analysis, network analysis, community detection and simulation. A sample of 922 health-related apps (including manufacturers' apps and developers) were collected through snowball sampling after an initial content analysis from a Google search for fitness tracking devices.

The network of fitness apps is disassortative with high-degree nodes connecting to low-degree nodes, follow a power-law degree distribution and present with low community structure. Information spreads faster through the network than an artificial small-world network and fastest when nodes with high degree centrality are the seeds.

This capability to spread information holds implications for both intended and unintended data sharing.

The analysis confirms and supports evidence of widespread mobility of data between fitness and health apps that were initially reported in earlier work and in addition provides evidence for the dynamic diffusion capability of the network based on its structure. The structure of the network enables the duality of the purpose of data sharing.

The implementation of mobile health (mHealth) in developing countries seems to be stuck in a pattern of successive pilot studies that struggle for mainstream implementation. This study addresses the research question: what existing health-related structures, properties and practices are presented by rural areas of developing countries that might inhibit the implementation of mHealth initiatives?

This study was conducted using a socio-material approach, based on an exploratory case study in West Africa. Interviews and participant observation were used to gather data. A thematic analysis identified important social and material agencies, practices and imbrications which may limit the effectiveness of mHealth apps in the region.

Findings show that, while urban healthcare is highly structured, best practice-led, rural healthcare relies on peer-based knowledge sharing, and community support. This has implications for the enacted materiality of mobile technologies. While urban actors see mHealth as a tool for automation and the enforcement of responsible healthcare best practice, rural actors see mHealth as a tool for greater interconnectivity and independent, decentralised care.

This study has two significant limitations. First, the study focussed on a region where technology-enabled guideline-driven treatment is the main mHealth concern. Second, consistent with the exploratory nature of this study, the qualitative methodology and the single-case design, the study makes no claim to statistical generalisability.

To the authors' knowledge, this is the first study to adopt a socio-material view that considers existing structures and practices that may influence the widespread adoption and assimilation of a new mHealth app. This helps identify contextual challenges that are limiting the potential of mHealth to improve outcomes in rural areas of developing countries.