Visions and Challenges in Managing and Preserving Data to Measure Quality of Life

Health-related data analysis plays an important role in self-knowledge, disease prevention, diagnosis, and quality of life assessment. With the advent of data-driven solutions, a myriad of apps and Internet of Things (IoT) devices (wearables, home-medical sensors, etc) facilitates data collection and provide cloud storage with a central administration. More recently, blockchain and other distributed ledgers became available as alternative storage options based on decentralised organisation systems. We bring attention to the human data bleeding problem and argue that neither centralised nor decentralised system organisations are a magic bullet for data-driven innovation if individual, community and societal values are ignored. The motivation for this position paper is to elaborate on strategies to protect privacy as well as to encourage data sharing and support open data without requiring a complex access protocol for researchers. Our main contribution is to outline the design of a self-regulated Open Health Archive (OHA) system with focus on quality of life (QoL) data.Comment: DSS 2018: Data-Driven Self-Regulating System

Smartphone as a Personal, Pervasive Health Informatics Services Platform: Literature Review

Objectives: The article provides an overview of current trends in personal sensor, signal and imaging informatics, that are based on emerging mobile computing and communications technologies enclosed in a smartphone and enabling the provision of personal, pervasive health informatics services. Methods: The article reviews examples of these trends from the PubMed and Google scholar literature search engines, which, by no means claim to be complete, as the field is evolving and some recent advances may not be documented yet. Results: There exist critical technological advances in the surveyed smartphone technologies, employed in provision and improvement of diagnosis, acute and chronic treatment and rehabilitation health services, as well as in education and training of healthcare practitioners. However, the most emerging trend relates to a routine application of these technologies in a prevention/wellness sector, helping its users in self-care to stay healthy. Conclusions: Smartphone-based personal health informatics services exist, but still have a long way to go to become an everyday, personalized healthcare-provisioning tool in the medical field and in a clinical practice. Key main challenge for their widespread adoption involve lack of user acceptance striving from variable credibility and reliability of applications and solutions as they a) lack evidence-based approach; b) have low levels of medical professional involvement in their design and content; c) are provided in an unreliable way, influencing negatively its usability; and, in some cases, d) being industry-driven, hence exposing bias in information provided, for example towards particular types of treatment or intervention procedures

Context-aware QoS provisioning for an M-health service platform

Inevitably, healthcare goes mobile. Recently developed mobile healthcare (i.e., m-health) services allow healthcare professionals to monitor mobile patient's vital signs and provide feedback to this patient anywhere at any time. Due to the nature of current supporting mobile service platforms, m-health services are delivered with a best-effort, i.e., there are no guarantees on the delivered Quality of Service (QoS). In this paper, we argue that the use of context information in an m-health service platform improves the delivered QoS. We give a first attempt to merge context information with a QoS-aware mobile service platform in the m-health services domain. We illustrate this with an epilepsy tele-monitoring scenario

Father involvement and men’s satisfaction of life

Introduction: The benefits of father involvement for children are widely acknowledged; involved fathers enhance academic success and protect children from improper behavior with benefits that extend far beyond the childhood years (Lamb, 2010; Lamb, Lewis, 2004; Pleck, 1997). Research to date has only just begun to consider another key question: How do parenting roles affect fathers? Purpose of work: The aim of this project is to verify the relationship between men’s involvement in paternity and men’s satisfaction of life. Specifically, the project aims at answering the following question: whether involvement in paternity is positively related to men’s satisfaction of life. Material and method: 100 people – men who are biological fathers, who have at least one child in school or pre-school age (one child aged at least 4 years old but the oldest is no more than 19 years old), first married. Paternity itself is differentiated that is why it is important to keep the homogeneity of the group. The research had a questionnaire character: SWLS scale and a sheet was used. Results: The research confirmed the relation between fatherhood satisfaction and satisfaction of life. Conclusions: Fatherhood is one of the way of men fulfillment understood as a satisfaction of life

Universality of Fluctuation-Dissipation Ratios: The Ferromagnetic Model

We calculate analytically the fluctuation-dissipation ratio (FDR) for Ising ferromagnets quenched to criticality, both for the long-range model and its short-range analogue in the limit of large dimension. Our exact solution shows that, for both models, $X^\infty=1/2$ if the system is unmagnetized while $X^\infty=4/5$ if the initial magnetization is non-zero. This indicates that two different classes of critical coarsening dynamics need to be distinguished depending on the initial conditions, each with its own nontrivial FDR. We also analyze the dependence of the FDR on whether local and global observables are used. These results clarify how a proper local FDR (and the corresponding effective temperature) should be defined in long-range models in order to avoid spurious inconsistencies and maintain the expected correspondence between local and global results; global observables turn out to be far more robust tools for detecting non-equilibrium FDRs.Comment: 14 pages, revtex4, published version. Changes from v1: added discussion of refs [16,36,37], other observables and local correlation/response in short-range mode

Improving patient safety through human-factor-based risk management

AbstractNational and international efforts under the initiative ‘patient safety’ aim for more safety and transparency within healthcare systems for both patients and professionals. Within the healthcare sector, workflows become more and more complex, while time and money become scarce. As the consequence, the risk awareness, fault management and quality aspects in general become more important. One of the most established risk assessment methods is Failure Mode and Effect Analysis (FMEA) – a reliability analysis and risk assessment tool widely used in various industries. The traditional FMEA is using a Risk Priority Number (RPN) ranking system to evaluate and identify the risk level of failures, and to prioritize actions. However, there are shortcomings in obtaining a quality estimate of the failure ratings with FMEA, especially when human factors play a role, as it is in healthcare. Thus, a new risk assessment method named HFdFMEA (Human Factor dependent FMEA) based on dependency of used parameters and observation of human factors, is proposed to address these drawbacks. The results of this paper show that the HFdFMEA does not only increase risk level of failures based on the inclusion of human-factors but also gives the possibility to reduce the risk level of failures through means of addressing human-factors via trainings, motivation, etc. Finally, we discuss the opportunity to improve patient safety as result of the proposed HFdFMEA, used as technique for Human-Factor-based Risk Management (RiDeM)

Effects of Sleep Deprivation on Blood Glucose, Food Cravings, and Affect in a Non-Diabetic:An N-of-1 Randomized Pilot Study

Sleep deprivation is a prevalent and rising health concern, one with known effects on blood glucose (BG) levels, mood, and calorie consumption. However, the mechanisms by which sleep deprivation affects calorie consumption (e.g., measured via self-reported types of craved food) are unclear, and may be highly idiographic (i.e., individual-specific). Single-case or “n-of-1” randomized trials (N1RT) are useful in exploring such effects by exposing each subject to both sleep deprivation and baseline conditions, thereby characterizing effects specific to that individual. We had two objectives: (1) To test and generate individual-specific N1RT hypotheses of the effects of sleep deprivation on next-day BG level, mood, and food cravings in two non-diabetic individuals; (2) To refine and guide a future n-of-1 study design for testing and generating such idiographic hypotheses for personalized management of sleep behavior in particular, and for chronic health conditions more broadly. We initially did not find evidence for idiographic effects of sleep deprivation, but better-refined post hoc findings indicate that sleep deprivation may have increased BG fluctuations, cravings, and negative emotions. We also introduce an application of mixed-effects models and pancit plots to assess idiographic effects over time

Świadomość i przekonania ojców na temat współczesnych zagrożeń i bezpieczeństwa dzieci = The awareness and conviction of the fathers on contemporary risks and safety of children

Urmański Jan, Wac Katarzyna. Świadomość i przekonania ojców na temat współczesnych zagrożeń i bezpieczeństwa dzieci = The awareness and conviction of the fathers on contemporary risks and safety of children. Journal of Education, Health and Sport. 2016;6(11):412-429. eISSN 2391-8306. DOI http://dx.doi.org/10.5281/zenodo.169555http://ojs.ukw.edu.pl/index.php/johs/article/view/4017   The journal has had 7 points in Ministry of Science and Higher Education parametric evaluation. Part B item 755 (23.12.2015).755 Journal of Education, Health and Sport eISSN 2391-8306 7© The Author (s) 2016;This article is published with open access at Licensee Open Journal Systems of Kazimierz Wielki University in Bydgoszcz, PolandOpen Access. This article is distributed under the terms of the Creative Commons Attribution Noncommercial License which permits any noncommercial use, distribution, and reproduction in any medium,provided the original author(s) and source are credited. This is an open access article licensed under the terms of the Creative Commons Attribution Non Commercial License(http://creativecommons.org/licenses/by-nc/4.0/) which permits unrestricted, non commercial use, distribution and reproduction in any medium, provided the work is properly cited.This is an open access article licensed under the terms of the Creative Commons Attribution Non Commercial License (http://creativecommons.org/licenses/by-nc/4.0/) which permits unrestricted, non commercialuse, distribution and reproduction in any medium, provided the work is properly cited.The authors declare that there is no conflict of interests regarding the publication of this paper.Received: 02.11.2016. Revised 22.11.2016. Accepted: 26.11.2016.   Świadomość i przekonania ojców na temat współczesnych zagrożeń i bezpieczeństwa dzieciThe awareness and conviction of the fathers on contemporary risks and safety of children Jan Urmański, Katarzyna Wac1 1Katedra Psychologii Emocji i Motywacji, Katolicki Uniwersytet Lubelski Jana Pawła II1Department of Emotion and Motivation Psychology, The John Paul II Catholic University of Lublin STRESZCZENIE Wprowadzenie: Współcześnie obserwuje się coraz bardziej zróżnicowane niebezpieczeństwa i zagrożenia, na które narażone są dzieci. Troska ze strony rodziców jest kluczowym czynnikiem chroniącym bezpieczeństwo dzieci. Szczególne znaczenie w wychowaniu i ochronie dzieci ma aktywna postawa ojców.Cel pracy: Zbadać świadomość oraz przekonania ojców na temat współczesnych zagrożeń i bezpieczeństwa dzieci i młodzieży. Zanalizować stan wiedzy ojców co do potencjalnych zagrożeń oraz stopień ich zaangażowania w wychowywanie dzieci.Materiał i metoda: Przeprowadzone zostało badanie ankietowe na grupie 439 ojców posiadających co najmniej jedno dziecko poniżej 18 roku życia. Została opracowana specjalna ankieta badawcza składającą się z 11 pytań, w tym trzech otwartych, oraz metryczki stanowiącej opis podstawowych cech społeczno-demograficznych respondenta.Wyniki: Wyniki badań wskazały na istotne różnice pomiędzy grupą ojców reprezentujących próbę ogólnopolską a tzw. aktywnymi, wyróżniającymi się większym zaangażowaniem w wychowywanie dzieci.Wnioski: Do kluczowych wniosków należy przede wszystkim wskazanie przez 94% ojców aktywnych przekonania co do wpływu na bezpieczeństwo dzieci. O 33% mniej ojców z grupy ogólnopolskiej zadeklarowało takie przekonanie. Można wnioskować, że aktywna postawa względem bycia ojcem silnie koreluje z poczuciem sprawczości. Ponadto ojcowie reprezentujący próbę ogólnopolską wskazują na inne źródła niebezpieczeństw niż ojcowie tzw. aktywni, w których ocenie pierwotnym źródłem niebezpieczeństwa dla młodego pokolenia jest brak silnej relacji rodzic – dziecko. Słowa kluczowe: współczesne zagrożenia, bezpieczeństwo dzieci, zaangażowane ojcostwo ABSTRACT Introduction: Today observed increasingly diverse dangers and threats to which children are exposed. The concern of parents is a key factor in protecting the safety of children. Of particular importance in the education and protection of children are proactive fathers.Objective: Examine the awareness and conviction of the fathers on the current risks and safety of children and youth. Analyze the state of the fathers of the potential threat and the degree of their involvement in raising children.Material and methods: survey has been conducted on a group of 439 fathers with at least one child under 18 years of age. It was developed a special research survey consisting of 11 questions, including three open, and the specifications which is the description of basic socio-demographic characteristics of the respondent.Results: The results showed significant differences between the group of fathers in the representative sample and the so-called active fathers, distinctive greater involvement in bringing up children.Conclusions: The key conclusion is that 94% of active fathers beliefs about the impact on the safety of children. About 33% less of representative fathers declared such a belief. It can be concluded that the active attitude toward being a father strongly correlates with a sense of effectiveness. In addition, fathers representing a representative sample attempt to suggest other sources of danger than involved fathers, in which the assessment of the primary source of danger for the young generation is the lack of a strong parent - child relationship. Keywords: contemporary risks, child safety, involved fatherhoo

Mobile Health Care over 3G Networks: the MobiHealth Pilot System and Service

Health care is one of the most prominent areas for the application of wireless technologies. New services and applications are today under research and development targeting different areas of health care, from high risk and chronic patients’ remote monitoring to mobility tools for the medical personnel. In this direction the MobiHealth project developed and trailed a system and a service that is using UMTS for the continuous monitoring and transmission of vital signals, like Pulse Oximeter sensor , temperature, Marker, Respiratory band, motion/activity detector etc., to the hospital. The system, based on the concept of the Body Area Network, is highly customisable, allowing sensors to be seamlessly connected and transmit the monitored vital signal measurements. The system and service was trialed in 4 European countries and it is presently under market validation

Optimizing Patient Management and Adherence for Children Receiving Growth Hormone.

Poor adherence with growth hormone (GH) therapy has been associated with worse clinical outcomes, which in children relates specifically to their linear growth and loss of quality of life. The "360° GH in Europe" meeting, held in Lisbon, Portugal, in June 2016 and funded by Merck KGaA (Germany), examined many aspects of GH diseases. The three sessions, entitled "Short Stature Diagnosis and Referral," "Optimizing Patient Management," and "Managing Transition," each benefited from three guest speaker presentations, followed by an open discussion and are reported as a manuscript, authored by the speakers. Reported here is a summary of the proceedings of the second session, which reviewed the determinants of GH therapy response, factors affecting GH therapy adherence and the development of innovative technologies to improve GH treatment in children. Response to GH therapy varies widely, particularly in regard to the underlying diagnosis, although there is little consensus on the definition of a poor response. If the growth response is seen to be less than expected, the possible reasons should be discussed with patients and their parents, including compliance with the therapy regimen. Understanding and addressing the multiple factors that influence adherence, in order to optimize GH therapy, requires a multi-disciplinary approach. Because therapy continues over many years, various healthcare professionals will be involved at different periods of the patient's journey. The role of the injection device for GH therapy, frequent monitoring of response, and patient support are all important for maintaining adherence. New injection devices are incorporating electronic technologies for automated monitoring and recording of clinically relevant information on injections. Study results are indicating that such devices can at least maintain GH adherence; however, acceptance of novel devices needs to be assessed and there remains an on-going need for innovations