scholarly journals User Perspectives of a Web-Based Data-Sharing Platform (Open Humans) on Ethical Oversight in Participant-Led Research: Protocol for a Quantitative Study (Preprint)

2018 ◽  
Author(s):  
Marta Fadda ◽  
Anna Jobin ◽  
Alessandro Blasimme ◽  
Bastian Greshake Tzovaras ◽  
Mad Price Ball ◽  
...  
Keyword(s):  
Data Sharing ◽  
Open Data ◽  
Medical Data ◽  
Ethical Framework ◽  
Survey Study ◽  
Research Projects ◽  
Web Based ◽  
The Relationship ◽  
Participation In Research ◽  
Ethical Oversight

BACKGROUND Advances in medicine rely to a great extent on people’s willingness to share their data with researchers. With increasingly widespread use of digital technologies, several Web-based communities have emerged aiming to enable their users to share large amounts of data, some of which can possibly be employed for research purposes by scientists, or to conduct participant-led research (PLR). Scholarship has recently addressed the necessity of interrogating how existing ethical standards can and should be applied and adapted in view of the specificities of such Web-based activities. So far, no study has explored participants’ beliefs about and attitudes toward ethical oversight when it comes to platforms that involve medical data sharing. OBJECTIVE This paper presents the protocol for a survey study aimed at understanding users’ beliefs about Web-based data-sharing platforms regarding how research ethics principles should be applied in such a setting. Furthermore, the study aims at quantitatively assessing the relationship between participants’ perspectives on ethical oversight and other variables such as previous participation in research, beliefs about data sharing, and attitudes toward self-experimentation. METHODS We are conducting a Web-based survey with users of a popular Web-based data-sharing platform, Open Humans. The survey has been sent to approximately 4640 users registered for the Open Humans newsletter. To fill out the survey, participants need to have an account on Open Humans. We expect a 5%-10% response rate (between 200 and 400 completed surveys out of approximately 4000 survey invitations sent). Independent variables include past data-sharing behavior and intention, beliefs about data sharing, past participation in research, attitudes toward self-experimentation, perceived knowledge of the platform’s guidelines and terms, perceived importance of having transparent guidelines, and governance-related beliefs. The main dependent variable is participants’ expectations regarding who should ensure that ethical requirements are met within research projects conducted on open data-sharing platforms, based on Emanuel et al’s ethical framework. We will use chi-square tests to assess the relationship between participants’ expectations regarding ethical oversight and their past behavior, future intentions, beliefs, attitudes, and knowledge. RESULTS Data collection started on June 13, 2018. A reminder to fill out the survey was sent to participants in mid-July. We expect to gain insights on users’ perspectives on the ethical oversight of Web-based data-sharing platforms and on the associated experiences, beliefs, and sociodemographic characteristics. CONCLUSIONS When digital tools allow people to engage in PLR including medical data, understanding how people interpret and envision the ethical oversight of their data-sharing practices is crucial. This will be the first study to explore users’ perspectives on ethical oversight of Web-based data-sharing platforms. The results will help inform the development of a framework that can be employed for platforms hosting various kinds of research projects to accommodate participants’ ethical oversight needs. INTERNATIONAL REGISTERED REPOR RR1-10.2196/10939

scholarly journals User Perspectives of a Web-Based Data-Sharing Platform (Open Humans) on Ethical Oversight in Participant-Led Research: Protocol for a Quantitative Study

10.2196/10939 ◽  
2018 ◽  
Vol 7 (11) ◽  
pp. e10939
Author(s):  
Marta Fadda ◽  
Anna Jobin ◽  
Alessandro Blasimme ◽  
Bastian Greshake Tzovaras ◽  
Mad Price Ball ◽  
...  
Keyword(s):  
Data Sharing ◽  
Quantitative Study ◽  
Research Protocol ◽  
Web Based ◽  
User Perspectives ◽  
Ethical Oversight

Gebirgswaldpflege – es kommt auf den Standort an | Mountain silviculture – it all depends on the site

2001 ◽  
Vol 152 (5) ◽  
pp. 169-176 ◽  
Author(s):  
Monika Frehner
Keyword(s):  
Nature Conservation ◽  
Low Temperature ◽  
Tree Species ◽  
Forest Stand ◽  
Ground Vegetation ◽  
Mountain Forests ◽  
Research Projects ◽  
Snow Mould ◽  
The Relationship ◽  
Protection Forests

The article shows that knowledge of the site of a particular forest stand, together with research results and experience, can provide information that is important for the cultivation of mountain forests, including knowledge of the composition of the tree species and the structure and growth capacity of natural forest. Furthermore, certain sites can, thus, be characterized by factors that influence restocking, such as snow mould,lush ground vegetation or low temperature. The guidelines«minimale Pflegemassnahmen» – «Minimal tending of protection forests» (WASSER und FREHNER, 1996) are based on this principle. For individual sites, warnings about natural dangers such as rock fall or statements concerning nature conservation can be made (e.g., the occurrence of tree species, suitability as a biotope for Capercaille). In conclusion, two research projects on the relationship between site and natural dangers will be presented.

Kuwaiti Hospital Patients’ Continuance Intention to Use Telemedical Systems in the Wake of the COVID-19 Pandemic: Survey Study Among Patients (Preprint)

2021 ◽  
Author(s):  
Ibtesam Almutairi
Keyword(s):  
Service Quality ◽  
Information Quality ◽  
Survey Study ◽  
Intention To Use ◽  
System Quality ◽  
Continuance Intention ◽  
Quantitative Research Methods ◽  
Patient’S Satisfaction ◽  
Relationship Of ◽  
The Relationship

BACKGROUND Telemedicine is a system using telecommunication technologies to diagnose, treat, and monitor patients by healthcare physicians and specialists in many developing countries such as Kuwait. Telemedicine services have proven to be successful in reporting and tracking patient records, delivering, real time monitoring, providing correct medications, and early detection of clinical decline. Covid-19 pandemic period have reinforced telemedicine system’s benefits even more in Kuwait. OBJECTIVE The objective of this study is to investigate factors influencing patients’ continuance intention to use telemedicine after the COVID-19 pandemic in the medical sector of Kuwait. METHODS The updated Delone and Maclean (2003) model was utilized to investigate the aforementioned factors. As such, this research applied quantitative research methods with a sample of 290 participants from patients in Dar Al Shifa Hospital, a private hospital in Kuwait which utilizes telemedical services called ‘Sehaty online’. The corresponding data was analyzed using SmartPLS. RESULTS The findings of this study revealed that the relationship of both telemedicine’s information quality and system quality with patient’s satisfaction are significant with (β = 0.377, t = 5.612, P < 0.001), (β = 0.295, t = 4.397, P < 0.001) respectively. While the relationship of service quality and patient’s satisfaction is not significant with (β = -0.056, t = 0.894, P > 0.05). patient’s satisfaction relationship with patients’ continuance intention to use telemedicine found to be significant with (β = 0.403, t = 8.732, P < 0.001). CONCLUSIONS It has been concluded that information quality and system quality have a positive and significant influence on patient’s satisfaction, whereas service quality has an insignificant influence on patient’s satisfaction. Also, patients’ continuance intention to use telemedicine is found to be significantly impacted by their satisfaction.

scholarly journals SPChain: Blockchain-based medical data sharing and privacy-preserving eHealth system

2021 ◽  
Vol 58 (4) ◽  
pp. 102604
Author(s):  
Renpeng Zou ◽  
Xixiang Lv ◽  
Jingsong Zhao
Keyword(s):  
Data Sharing ◽  
Privacy Preserving ◽  
Medical Data

scholarly journals A Large-Scale COVID-19 Twitter Chatter Dataset for Open Scientific Research—An International Collaboration

Epidemiologia ◽  
2021 ◽  
Vol 2 (3) ◽  
pp. 315-324
Author(s):  
Juan M. Banda ◽  
Ramya Tekumalla ◽  
Guanyu Wang ◽  
Jingyuan Yu ◽  
Tuo Liu ◽  
...  
Keyword(s):  
Large Scale ◽  
Social Dynamics ◽  
Additional Data ◽  
Open Data ◽  
Data Sources ◽  
Research Projects ◽  
Research Groups ◽  
The World ◽  
Data Source

As the COVID-19 pandemic continues to spread worldwide, an unprecedented amount of open data is being generated for medical, genetics, and epidemiological research. The unparalleled rate at which many research groups around the world are releasing data and publications on the ongoing pandemic is allowing other scientists to learn from local experiences and data generated on the front lines of the COVID-19 pandemic. However, there is a need to integrate additional data sources that map and measure the role of social dynamics of such a unique worldwide event in biomedical, biological, and epidemiological analyses. For this purpose, we present a large-scale curated dataset of over 1.12 billion tweets, growing daily, related to COVID-19 chatter generated from 1 January 2020 to 27 June 2021 at the time of writing. This data source provides a freely available additional data source for researchers worldwide to conduct a wide and diverse number of research projects, such as epidemiological analyses, emotional and mental responses to social distancing measures, the identification of sources of misinformation, stratified measurement of sentiment towards the pandemic in near real time, among many others.

scholarly journals Data Dentistry: How Data Are Changing Clinical Care and Research

2021 ◽  
pp. 002203452110202
Author(s):  
F. Schwendicke ◽  
J. Krois
Keyword(s):  
Health Care ◽  
Data Sharing ◽  
Clinical Care ◽  
Open Data ◽  
User Interaction ◽  
Data Availability ◽  
Related Data ◽  
Data User ◽  
Regulatory Data ◽  
Consumer Data

Data are a key resource for modern societies and expected to improve quality, accessibility, affordability, safety, and equity of health care. Dental care and research are currently transforming into what we term data dentistry, with 3 main applications: 1) medical data analysis uses deep learning, allowing one to master unprecedented amounts of data (language, speech, imagery) and put them to productive use. 2) Data-enriched clinical care integrates data from individual (e.g., demographic, social, clinical and omics data, consumer data), setting (e.g., geospatial, environmental, provider-related data), and systems level (payer or regulatory data to characterize input, throughput, output, and outcomes of health care) to provide a comprehensive and continuous real-time assessment of biologic perturbations, individual behaviors, and context. Such care may contribute to a deeper understanding of health and disease and a more precise, personalized, predictive, and preventive care. 3) Data for research include open research data and data sharing, allowing one to appraise, benchmark, pool, replicate, and reuse data. Concerns and confidence into data-driven applications, stakeholders’ and system’s capabilities, and lack of data standardization and harmonization currently limit the development and implementation of data dentistry. Aspects of bias and data-user interaction require attention. Action items for the dental community circle around increasing data availability, refinement, and usage; demonstrating safety, value, and usefulness of applications; educating the dental workforce and consumers; providing performant and standardized infrastructure and processes; and incentivizing and adopting open data and data sharing.

scholarly journals Fengyun Meteorological Satellite Products for Earth System Science Applications

2021 ◽  
Author(s):  
Di Xian ◽  
Peng Zhang ◽  
Ling Gao ◽  
Ruijing Sun ◽  
Haizhen Zhang ◽  
...  
Keyword(s):  
Data Sharing ◽  
Satellite Data ◽  
Prediction Models ◽  
Weather Forecasting ◽  
Numerical Models ◽  
Weather Prediction ◽  
Vegetation Indices ◽  
Open Data ◽  
Earth System ◽  
Inversion Algorithm

AbstractFollowing the progress of satellite data assimilation in the 1990s, the combination of meteorological satellites and numerical models has changed the way scientists understand the earth. With the evolution of numerical weather prediction models and earth system models, meteorological satellites will play a more important role in earth sciences in the future. As part of the space-based infrastructure, the Fengyun (FY) meteorological satellites have contributed to earth science sustainability studies through an open data policy and stable data quality since the first launch of the FY-1A satellite in 1988. The capability of earth system monitoring was greatly enhanced after the second-generation polar orbiting FY-3 satellites and geostationary orbiting FY-4 satellites were developed. Meanwhile, the quality of the products generated from the FY-3 and FY-4 satellites is comparable to the well-known MODIS products. FY satellite data has been utilized broadly in weather forecasting, climate and climate change investigations, environmental disaster monitoring, etc. This article reviews the instruments mounted on the FY satellites. Sensor-dependent level 1 products (radiance data) and inversion algorithm-dependent level 2 products (geophysical parameters) are introduced. As an example, some typical geophysical parameters, such as wildfires, lightning, vegetation indices, aerosol products, soil moisture, and precipitation estimation have been demonstrated and validated by in-situ observations and other well-known satellite products. To help users access the FY products, a set of data sharing systems has been developed and operated. The newly developed data sharing system based on cloud technology has been illustrated to improve the efficiency of data delivery.

scholarly journals SOCIAL NETWORKS, HEALTH, AND WELL-BEING AMONG PEOPLE LIVING WITH DEMENTIA

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S71-S71
Author(s):  
Eleanor S McConnell ◽  
Kirsten Corazzini ◽  
T Robert Konrad
Keyword(s):  
Older Adults ◽  
Social Networks ◽  
Well Being ◽  
Sensor Technology ◽  
Web Based ◽  
Use Of Technology ◽  
Care Partners ◽  
The Impact ◽  
The Relationship ◽  
Health And Well Being

Abstract Although the impact of dementia on the health and well-being of those living with Alzheimer’s Disease and related Disorders (ADRD) and their care partners has been widely studied, less attention has been paid to how the disease impacts individuals within the context of their larger social networks. This symposium presents findings from a series of integrated studies aimed at strengthening measurement of health and well-being among older adults with living with dementia and well-being among members of their social networks. Findings will be presented from five studies: (1) a scoping review of social network measurement in older adults in chronic illness, including dementia, that emphasizes the use of technology in measuring older adults’ social networks; (2) a simulation study to evaluate the feasibility and reliability of sensor technology to measure social interaction among a person living with dementia and others in their immediate surroundings; (3) development of a web-based application that allows older adults to map and activate their social networks; (4) a qualitative analysis of interviews from persons living with dementia, their unpaid caregivers, and paid caregivers from an adult day health program concerning well-being focused outcomes; and (5) a mixed methods analysis of the feasibility of using both traditional and novel measures of health and well-being deployed among networks of people living with dementia. Emerging technologies for measuring social networks health and well-being hold promise for advancing the study of the relationship-based nature of care for people living with dementia.

scholarly journals Human Subjects Requirements and Economic Education Researchers

2007 ◽  
Vol 51 (2) ◽  
pp. 49-60 ◽  
Author(s):  
Jane S. Lopus ◽  
Paul W. Grimes ◽  
William E. Becker ◽  
Rodney A. Pearson
Keyword(s):  
Human Subjects ◽  
Economic Education ◽  
Opportunity Costs ◽  
Federal Regulations ◽  
Research Projects ◽  
Human Subjects Research ◽  
Web Based ◽  
American Universities ◽  
Net Benefits ◽  
Low Levels

This paper presents the results of a web-based survey of economic educators who were asked about their knowledge and experience with human subjects research and the mandated federal protocols that govern such research at most American universities. The results indicate that while economic education researchers are experienced in conducting human subjects research and are aware of the federal regulations, they are not well informed about key details of the regulations. They are skeptical of the net benefits of the mandated protocols because of the perceived discouraging burdens of the paperwork that rarely result in significant modifications of their research projects. The authors conclude that recent calls for modifications to the federal regulations for classroom-based research projects may be justified given the opportunity costs of adhering to the regulations compared to the relatively low levels of perceived benefits.

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