scholarly journals Um Novo Paradigma em Investigação em Saúde: Dados FAIR (Localizáveis, Acessíveis, Interoperáveis, Reutilizáveis)

2020 ◽  
Vol 33 (12) ◽  
pp. 828
Author(s):  
Marta Almada ◽  
Luis Midão ◽  
Diana Portela ◽  
Ines Dias ◽  
Francisco J. Núñez-Benjumea ◽  
...  
Keyword(s):  
Health Care ◽  
Ethical Issues ◽  
Digital Health ◽  
Individualized Medicine ◽  
Health Data ◽  
Sensitive Data ◽  
General Data Protection Regulation ◽  
Health Technologies ◽  
Health Care Models ◽  
Care Models

The digital era, that we are living nowadays, is transforming health, health care models and services, and the role of society in this new reality. We currently have a large amount of stored health data, including clinical, biometric, and scientific research data. Nonetheless, its potential is not being fully exploited. It is essential to foster the sharing and reuse of this data not only in research but also towards the development of health technologies in order to improve health care efficiency, as well as products, services or digital health apps, to promote preventive and individualized medicine and to empower citizens in health literacy and self-management. In this sense, the FAIR concept has emerged, which implies that health data is findable, accessible, shared and reusable, facilitating interoperability between systems, ensuring the protection of personal and sensitive data. In this paper we review the FAIR concept, ‘FAIRification’ process, FAIR data versus open access data, ethical issues and the general data protection regulation, and digital health and citizen science.

scholarly journals COVID-19: Putting the General Data Protection Regulation to the Test (Preprint)

2020 ◽  
Author(s):  
Stuart McLennan ◽  
Leo Anthony Celi ◽  
Alena Buyx
Keyword(s):  
Health Care ◽  
Data Protection ◽  
Health Research ◽  
Health Care Organizations ◽  
Digital Health ◽  
Health Data ◽  
Individual Risk ◽  
Risk Minimization ◽  
General Data Protection Regulation ◽  
General Data

UNSTRUCTURED The coronavirus disease (COVID-19) pandemic is very much a global health issue and requires collaborative, international health research efforts to address it. A valuable source of information for researchers is the large amount of digital health data that are continuously collected by electronic health record systems at health care organizations. The European Union’s General Data Protection Regulation (GDPR) will be the key legal framework with regard to using and sharing European digital health data for research purposes. However, concerns persist that the GDPR has made many organizations very risk-averse in terms of data sharing, even if the regulation permits such sharing. Health care organizations focusing on individual risk minimization threaten to undermine COVID-19 research efforts. In our opinion, there is an ethical obligation to use the research exemption clause of the GDPR during the COVID-19 pandemic to support global collaborative health research efforts. Solidarity is a European value, and here is a chance to exemplify it by using the GDPR regulatory framework in a way that does not hinder but actually fosters solidarity during the COVID-19 pandemic.

Remote Monitoring of Patient- and Family-Generated Health Data in Pediatrics

PEDIATRICS ◽  
2022 ◽  
Author(s):  
Carolyn Foster ◽  
Dana Schinasi ◽  
Kristin Kan ◽  
Michelle Macy ◽  
Derek Wheeler ◽  
...  
Keyword(s):  
Health Care ◽  
Digital Literacy ◽  
Care Delivery ◽  
Digital Health ◽  
Health Care Team ◽  
Models Of Care ◽  
Health Data ◽  
Care Needs ◽  
Case Examples ◽  
Health Technologies

Remote patient monitoring (RPM) is a form of telemedicine that involves the collection and transmission of health data from a patient to their health care team by using digital health technologies. RPM can be leveraged to aggregate and visualize longitudinal patient-generated health data for proactive clinical management and engagement of the patient and family in a child’s health care. Collection of remote data has been considered standard of care for years in some chronic pediatric conditions. However, software limitations, gaps in access to the Internet and technology devices, digital literacy, insufficient reimbursement, and other challenges have prevented expansion of RPM in pediatric medicine on a wide scale. Recent technological advances in remote devices and software, coupled with a shift toward virtual models of care, have created a need to better understand how RPM can be leveraged in pediatrics to improve the health of more children, especially for children with special health care needs who are reliant on high-quality chronic disease management. In this article, we define RPM for the general pediatric health care provider audience, provide case examples of existing RPM models, discuss advantages of and limitations to RPM (including how data are collected, evaluated, and managed), and provide a list of current RPM resources for clinical practitioners. Finally, we propose considerations for expansion of this health care delivery approach for children, including clinical infrastructure, equitable access to digital health care, and necessary reimbursement. The overarching goal is to advance health for children by adapting RPM technologies as appropriate and beneficial for patients, families, and providers alike.

scholarly journals The Sociotechnical Ethics of Digital Health: A Critique and Extension of Approaches From Bioethics

2021 ◽  
Vol 3 ◽  
Author(s):  
James A. Shaw ◽  
Joseph Donia
Keyword(s):  
Health Care ◽  
Interpersonal Relationships ◽  
Ethical Issues ◽  
Digital Health ◽  
Ethical Analysis ◽  
Ethical Perspective ◽  
Broad Perspective ◽  
Organizational Policies ◽  
Sociotechnical System ◽  
Health Technologies

The widespread adoption of digital technologies raises important ethical issues in health care and public health. In our view, understanding these ethical issues demands a perspective that looks beyond the technology itself to include the sociotechnical system in which it is situated. In this sense, a sociotechnical system refers to the broader collection of material devices, interpersonal relationships, organizational policies, corporate contracts, and government regulations that shape the ways in which digital health technologies are adopted and used. Bioethical approaches to the assessment of digital health technologies are typically confined to ethical issues raised by features of the technology itself. We suggest that an ethical perspective confined to functions of the technology is insufficient to assess the broader impact of the adoption of technologies on the care environment and the broader health-related ecosystem of which it is a part. In this paper we review existing approaches to the bioethics of digital health, and draw on concepts from design ethics and science & technology studies (STS) to critique a narrow view of the bioethics of digital health. We then describe the sociotechnical system produced by digital health technologies when adopted in health care environments, and outline the various considerations that demand attention for a comprehensive ethical analysis of digital health technologies in this broad perspective. We conclude by outlining the importance of social justice for ethical analysis from a sociotechnical perspective.

scholarly journals COVID-19: Putting the General Data Protection Regulation to the Test

10.2196/19279 ◽  
2020 ◽  
Vol 6 (2) ◽  
pp. e19279 ◽  
Author(s):  
Stuart McLennan ◽  
Leo Anthony Celi ◽  
Alena Buyx
Keyword(s):  
Health Care ◽  
Data Protection ◽  
Health Research ◽  
Health Care Organizations ◽  
Digital Health ◽  
Health Data ◽  
Individual Risk ◽  
Risk Minimization ◽  
General Data Protection Regulation ◽  
General Data

The coronavirus disease (COVID-19) pandemic is very much a global health issue and requires collaborative, international health research efforts to address it. A valuable source of information for researchers is the large amount of digital health data that are continuously collected by electronic health record systems at health care organizations. The European Union’s General Data Protection Regulation (GDPR) will be the key legal framework with regard to using and sharing European digital health data for research purposes. However, concerns persist that the GDPR has made many organizations very risk-averse in terms of data sharing, even if the regulation permits such sharing. Health care organizations focusing on individual risk minimization threaten to undermine COVID-19 research efforts. In our opinion, there is an ethical obligation to use the research exemption clause of the GDPR during the COVID-19 pandemic to support global collaborative health research efforts. Solidarity is a European value, and here is a chance to exemplify it by using the GDPR regulatory framework in a way that does not hinder but actually fosters solidarity during the COVID-19 pandemic.

Primary Health Care Models Addressing Health Equity for Immigrants: A Systematic Scoping Review

2016 ◽  
Vol 20 (1) ◽  
pp. 214-230 ◽  
Author(s):  
Ricardo Batista ◽  
Kevin Pottie ◽  
Louise Bouchard ◽  
Edward Ng ◽  
Peter Tanuseputro ◽  
...  
Keyword(s):  
Health Care ◽  
Primary Health Care ◽  
Health Equity ◽  
Scoping Review ◽  
Primary Health ◽  
Health Care Models ◽  
Care Models

scholarly journals Digital Health Interventions for Healthy Aging: A Qualitative User Evaluation and Ethical Assessment

2020 ◽  
Author(s):  
Marcello Ienca ◽  
Christophe Schneble ◽  
Reto Kressig ◽  
Tenzin Wangmo
Keyword(s):  
Older Adults ◽  
Older People ◽  
Healthy Aging ◽  
Ethical Issues ◽  
Digital Health ◽  
Functional Independence ◽  
Community Dwelling ◽  
Healthy Ageing ◽  
Health Technologies ◽  
Community Dwelling Older Adults

Abstract BackgroundDigital health technologies are being increasingly developed with the aim of allowing older adults to maintain functional independence throughout the old age, a process known as healthy ageing. Such digital health technologies for healthy ageing are expected to mitigate the socio-economic effects of population ageing and improve the quality of life of older people. However, little is known regarding the views and needs of older people regarding these technologies. AimThe aim of this study is to explore the views, needs and perceptions of community-dwelling older adults regarding the use of digital health technologies for healthy ageing. MethodFace-to-face, in-depth qualitative interviews were conducted with community-dwelling older adults (median age 79.6 years). The interview process involved both abstract reflections and practical demonstrations. The interviews were transcribed verbatim and analyzed according to inductive content analysis. ResultsThree main themes and twelve sub-themes emerged. The three main themes revolved around the following thematic areas: favorable views and perceptions on technology-assisted living, usability evaluations and ethical considerations. ConclusionsOur study reveals a generally positive attitude towards digital health technologies as participants believed digital tools could positively contribute to improving their overall wellbeing, especially if designed in a patient-centered manner. Safety concerns and ethical issues related to privacy, empowerment and lack of human contact also emerged as key considerations.

scholarly journals Comparative analysis of economic provision of health care of foreign countries and Ukraine

2019 ◽  
Vol 6 (2) ◽  
pp. 319-330
Author(s):  
Irina Kinash ◽  
Liliia Savchuk
Keyword(s):  
Health Care ◽  
Comparative Analysis ◽  
Health Care Systems ◽  
Economic Regulation ◽  
Internet Resources ◽  
Foreign Countries ◽  
Economic Support ◽  
Health Care Models ◽  
Care Models ◽  
Care Systems

The manuscript focuses on researching and generalizing the experiences of the economic provision of existing foreign health care models. Under the economic regulation of health, the authors of the work understand the components, which combine financial, material, and human resources. The article presents a comparative analysis of economic support for the health systems of different countries. The study covers the period from 2007 to 2016. Indicators used are derived from the databases of the Organization for Economic Cooperation and Development (OECD) on health. A content analysis of scientific literature and Internet resources, databases of international organizations, which contain data on the economic provision of health care systems of different countries, was conducted. Bibliosemantic, comparative, and analytical methods are used.

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