Collecting, exploring and sharing personal data: Why, how and where

Data Science ◽  
2020 ◽  
Vol 3 (2) ◽  
pp. 79-106
Author(s):  
Vero Estrada-Galiñanes ◽  
Katarzyna Wac
Keyword(s):  
Quality Of Life ◽  
Data Storage ◽  
Large Scale ◽  
Personal Data ◽  
Data Sources ◽  
Open Platform ◽  
Quality Of Life Research ◽  
Societal Needs ◽  
Lifestyle Choices

New, multi-channel personal data sources (like heart rate, sleep patterns, travel patterns, or social activities) are enabled by ever increased availability of miniaturised technologies embedded within smartphones and wearables. These data sources enable personal self-management of lifestyle choices (e.g., exercise, move to a bike-friendly area) and, on a large scale, scientific discoveries to improve health and quality of life. However, there are no simple and reliable ways for individuals to securely collect, explore and share these sources. Additionally, much data is also wasted, especially when the technology provider ceases to exist, leaving the users without any opportunity to retrieve own datasets from “dead” devices or systems. Our research reveals evidence of what we term human data bleeding and offers guidance on how to address current issues by reasoning upon five core aspects, namely technological, financial, legal, institutional and cultural factors. To this end, we present preliminary specifications of an open platform for personal data storage and quality of life research. The Open Health Archive (OHA) is a platform that would support individual, community and societal needs by facilitating collecting, exploring and sharing personal health and QoL data.

Assessment of quality of life in patients with the effects of transient ischemic stroke

2016 ◽  
pp. 37-39
Author(s):  
A. Babirad
Keyword(s):  
Quality Of Life ◽  
Ischemic Stroke ◽  
Large Scale ◽  
Cerebrovascular Diseases ◽  
Control Measures ◽  
Sociological Research ◽  
Cerebrovascular Events ◽  
Sf 36 ◽  
Angioplasty And Stenting

Cerebrovascular diseases are a problem of the world today, and according to the forecast, the problem of the near future arises. The main risk factors for the development of ischemic disorders of the cerebral circulation include oblique and aging, arterial hypertension, smoking, diabetes mellitus and heart disease. An effective strategy for the prevention of cerebrovascular events is based on the implementation of large-scale risk control measures, including the use of antiagregant and anticoagulant therapy, invasive interventions such as atheromectomy, angioplasty and stenting. In this connection, the efforts of neurologists, cardiologists, angiosurgery, endocrinologists and other specialists are the basis for achieving an acceptable clinical outcome. A review of the SF-36 method for assessing the quality of life in patients with the effects of transient ischemic stroke is presented. The assessment of quality of life is recognized in world medical practice and research, an indicator that is also used to assess the quality of the health system and in general sociological research.

Experience in the use of double broncholytic therapy in occupational practice

2019 ◽  
pp. 303-307
Author(s):  
Elena A. Beigel ◽  
Natalya G. Kuptsova ◽  
Elena V. Katamanova ◽  
Oksana V. Ushakova ◽  
Oleg L. Lakhman
Keyword(s):  
Quality Of Life ◽  
Personal Data ◽  
The Body ◽  
Step Test ◽  
Aluminum Production ◽  
Chronic Obstructive ◽  
Body Plethysmography ◽  
Occupational Copd ◽  
The Impact

Introduction. Occupational chronic obstructive pulmonary disease (COPD) is one of the leading nosological forms of occupational respiratory disease. Numerous studies have shown high effectiveness of the combination of indacaterol/glycopyrronium (Ultibro®breezhaler®) on the impact on clinical and functional indicators in the treatment of COPD in General practice.The aim of the investigation the case of occupational COPD with the analysis of the dynamics of functional indicators, tolerance to physical load and evaluation of the quality of life of workers engaged in aluminum production by using combination of indacaterol/glycopyrronium.Materials and methods. The random sampling method included 20 men, workers of aluminum production, with the established diagnosis of professional COPD at the age of 40 to 60 years. The survey was conducted (Borg scale, medical Research Council scale (mMRC) and COPD Assessment Test (CAT). Functional methods of studies were conducted: spirometry, body plethysmography, electrocardiography (ECG) and the six-minute stepper test (6-MST).Results. Against the background of 8 weeks of therapy, the volume of forced exhalation for 1 minute (FEV1) increased by 14.7% and amounted to 67.90% of the due values, the forced vital capacity of the lungs (FVC) increased by 11.3% and amounted to 76.95% of the due. According to the body plethysmography (BPG) is set to decrease in residual lung volume on average by 13.4% and static hyperinflation, confirmed by the decrease in functional residual volume (FRV) of 18.8%. During the study period increased physical activity of patients. The average difference between the distance traveled in the six-minute step test before and after treatment was 58.8 m. The analysis of personal data showed that the quality of life of patients improved, the total score in the questionnaire CAT at the beginning of the study was 16.9 points, and after 8 weeks decreased by 63% and amounted to 10.7 points.Conclusions: The Results indicate a positive effect of combination therapy with indacaterol/glycopyrronium on the course and progression of occupational COPD.

Translation and Validation of the Thai Version of the Wisconsin Quality of Life Questionnaire (TH WISQoL) for Kidney Stone Patients

2020 ◽  
Vol 103 (11) ◽  
pp. 1194-1199
Keyword(s):  
Quality Of Life ◽  
Internal Consistency ◽  
Kidney Stone ◽  
Convergent Validity ◽  
Large Scale ◽  
Short Form ◽  
Outcome Measurement ◽  
Life Questionnaire ◽  
Sf 36

Objective: To develop and validate a Thai version of the Wisconsin Quality of Life (TH WISQoL) Questionnaire. Materials and Methods: The authors developed the TH WISQoL Questionnaire based on a standard multi-step process. Subsequently, the authors recruited patients with kidney stone and requested them to complete the TH WISQoL and a validated Thai version of the 36-Item Short Form Survey (TH SF-36). The authors calculated the internal consistency and interdomain correlation of TH WISQoL and compared the convergent validity between the two instruments. Results: Thirty kidney stone patients completed the TH WISQoL and the TH SF-36. The TH WISQoL showed acceptable internal consistency for all domains (Cronbach’s alpha 0.768 to 0.909). Interdomain correlation was high for most domains (r=0.698 to 0.779), except for the correlation between Vitality and Disease domains, which showed a moderate correlation (r=0.575). For convergent validity, TH WISQoL demonstrated a good overall correlation to TH SF-36, (r=0.796, p<0.05). Conclusion: The TH WISQoL is valid and reliable for evaluating the quality of life of Thai patients with kidney stone. A further large-scale multi-center study is warranted to confirm its applicability in Thailand. Keywords: Quality of life, Kidney stone, Validation, Outcome measurement

Biopsychosocial Patterning of Multimorbidity and Its Consequences

2018 ◽  
pp. 220-236
Author(s):  
Elliot Friedman ◽  
Beth LeBreton ◽  
Lindsay Fuzzell ◽  
Elizabeth Wehrpsann
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
Functional Outcomes ◽  
The United States ◽  
Chronic Medical Conditions ◽  
Quality Of Life Research ◽  
Increased Risk ◽  
Over Time

By many estimates the majority of adults over age 65 have two or more chronic medical conditions (multimorbidity) and are consequently at increased risk of adverse functional outcomes. Nonetheless, many older adults with multimorbidity are able to maintain high levels of function and retain good quality of life. Research presented here is designed to understand the influences that help ensure better functional outcomes in these older adults. This chapter presents findings that draw on data from the Midlife in the United States study. The independent and interactive contributions of diverse factors to multimorbidity and changes in multimorbidity over time are reviewed. The degree that multimorbidity increases risk of cognitive impairment and disability is examined. The role of inflammation as a mediator is considered. Multimorbidity is increasingly the norm for older adults, so better understanding of factors contributing to variability in multimorbidity-related outcomes can lead to improved quality of life.

scholarly journals Quality of Life and Philosophy of Life Determines Physical and Mental Health: Status Over Research Findings From The Quality of Life Research Center, Copenhagen, 1991-2007

2007 ◽  
Vol 7 ◽  
pp. 1743-1751 ◽  
Author(s):  
Søren Ventegodt ◽  
Isack Kandel ◽  
Joav Merrick
Keyword(s):  
Quality Of Life ◽  
Good Life ◽  
Public Awareness ◽  
Social Indicators ◽  
Health Science ◽  
Physical And Mental Health ◽  
Quality Of Life Research ◽  
Global Quality Of Life ◽  
The Individual

Quality of life (QOL) has over the past decade become an important part of health science and also increased public awareness. It has become increasingly apparent that illness is closely related to the individual perception of a good life, and therefore the exploration of indicators related to quality of life appears to be of broad importance for the prevention and treatment of diseases. Identifying, which factors constitute a good life may reveal an understanding about what areas in life should be encouraged, in order to enhance the global quality of life, health, and ability. In this paper we present results from studies initiated in 1989 to examine quality of life in relation to disease. The purpose of this presentation was to assemble the results from the study carried out in the years between 1993 and 1997, examining a total of 11.500 Danes, to show the association between quality of life and a wide series of social indicators.

A Mixed Method Approach to Quality of Life Research: A Case Study Approach

2007 ◽  
Vol 85 (1) ◽  
pp. 145-158 ◽  
Author(s):  
Heather Dunning ◽  
Allison Williams ◽  
Sylvia Abonyi ◽  
Valorie Crooks
Keyword(s):  
Quality Of Life ◽  
Mixed Method ◽  
Case Study Approach ◽  
Mixed Method Approach ◽  
Study Approach ◽  
Quality Of Life Research ◽  
Method Approach

Deterioration of basic activities of daily living and their impact on quality of life across different cognitive stages of dementia: a European study

2014 ◽  
Vol 26 (8) ◽  
pp. 1283-1293 ◽  
Author(s):  
Clarissa M. Giebel ◽  
Caroline Sutcliffe ◽  
Minna Stolt ◽  
Staffan Karlsson ◽  
Anna Renom-Guiteras ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Activities Of Daily Living ◽  
Daily Living ◽  
Large Scale ◽  
Depressive Symptomatology ◽  
European Study ◽  
Severe Dementia ◽  
People With Dementia ◽  
Adl Performance

ABSTRACTBackground:Performing basic activities of daily living (ADLs) is one of the major difficulties encountered in dementia, which can have considerable negative impacts on the quality of life (QoL) of people with dementia (PwD). However, the extent to which basic ADL performance deteriorates across mild, moderate, and severe dementia is little examined and its impact, together with depression and neuropsychiatric behavior, upon QoL, is of considerable relevance across European countries.Methods:Data were drawn from people living in the community who were participants in a large-scale European study on transition from community living to care homes of PwD. PwD completed measures on cognitive functioning and QoL, and informal carers reported upon QoL, depressive symptomatology, psychopathology, and functional ability of the PwD.Results:ADL performance deteriorated differently for each activity. In particular, toileting, transfer, and feeding remained relatively intact throughout, whereas performance on bathing and dressing deteriorated to a greater extent from mild to severe dementia. It appears that continence was not affected by the stage of dementia with similar levels of impairment. Basic ADL performance impacted to different degrees on QoL across dementia stages and countries.Conclusions:Interventions aimed at maintaining independence or QoL need to target different ADLs across different dementia stages and perhaps also tailor interventions to the context of different countries. Findings contribute to the development of non-pharmaceutical interventions and governmental pledges to promote independence in dementia.

scholarly journals Variation in the Quality of Life within Punjab: Evidence from MICS, 2007-08

2010 ◽  
Vol 49 (4II) ◽  
pp. 863-879
Author(s):  
Rashida Haq Rashida Haq ◽  
Azkar Ahmed ◽  
Siama Shafique
Keyword(s):  
Quality Of Life ◽  
Good Life ◽  
Well Being ◽  
Living Conditions ◽  
Final Outcome ◽  
Subjective Well Being ◽  
Quality Of Life Research ◽  
Level Of Living ◽  
Broad Continuum

Since quality of life research is essentially concerned with measuring and monitoring welfare. In order to measure quality of life, one must have a theory of what makes up a good life [Cobb (2000)]. There is a variety of such theories and notions of what constitutes a ‗good life‘ and correspondingly different concepts of welfare and quality of life have been developed. Various approaches and operationalisations are to be distinguished, each of which reveals a different concept of welfare and thus highlights different components and dimensions [Noll (2000)]. Among the various efforts to operationalise welfare in general and the quality of life concept in particular, two contrary approaches are to be distinguished, which define the two extreme positions on a broad continuum of concepts currently available: the Scandinavian level of living approach [Erickson (1993)] and the American quality of life approach [Campbell (1976)]. The Scandinavian approach focuses almost exclusively on resources and objective living conditions, whereas the American approach emphasises the subjective well-being of individuals as a final outcome of conditions and processes.

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