scholarly journals Ethical challenges associated with health-related big data research

2019 ◽  
Vol 29 (Supplement_4) ◽  
Author(s):  
M Ienca
Keyword(s):  
Public Health ◽  
Big Data ◽  
Private Information ◽  
Public Mental Health ◽  
Public Health Research ◽  
Health Data ◽  
Knowledge Generation ◽  
Ethical Challenges ◽  
Ethical Assessment ◽  
Health Related

Abstract Big data trends in biomedical and public health research hold promise for improving prevention, enabling earlier diagnosis, optimizing resource allocation, and delivering more tailored treatments to patients with specific disease trajectories. At the same time, due to their methodological novelty, algorithmic complexity and reliance on data mining for knowledge generation, big data approaches raise ethical challenges. This talk presents an overview of the major ethical challenges associated with health-related big data research. These include demarcating the boundary between personal health data and non-health data, re-defining the notion of private information, sustaining trust in health data sharing, preventing data-driven discrimination and ensuring a fair distribution of benefits and burdens among all stakeholders. Case studies from dementia research and public mental health will be discussed to illustrate these challenges and provide an ethical assessment. Furthermore, this talk will provide an overview of the normative proposals that have been recently advanced to align health-related big data research with established regulatory frameworks such as data protection regulation, regulation on human subject research and ethics review. Based on this analysis, suggestions will be made on how to maximise the benefits of big data for public health while minimizing ethical risks.

Navigating the Ethics of Big Data in Public Health

2019 ◽  
pp. 353-367
Author(s):  
Effy Vayena ◽  
Lawrence Madoff
Keyword(s):  
Public Health ◽  
Big Data ◽  
Credit Card ◽  
Health Sector ◽  
Public Health Research ◽  
Ethical Challenges ◽  
The Public ◽  
Health Community ◽  
Digital Disease Detection ◽  
The Public Sphere

“Big data,” which encompasses massive amounts of information from both within the health sector (such as electronic health records) and outside the health sector (social media, search queries, cell phone metadata, credit card expenditures), is increasingly envisioned as a rich source to inform public health research and practice. This chapter examines the enormous range of sources, the highly varied nature of these data, and the differing motivations for their collection, which together challenge the public health community in ethically mining and exploiting big data. Ethical challenges revolve around the blurring of three previously clearer boundaries: between personal health data and nonhealth data; between the private and the public sphere in the online world; and, finally, between the powers and responsibilities of state and nonstate actors in relation to big data. Considerations include the implications for privacy, control and sharing of data, fair distribution of benefits and burdens, civic empowerment, accountability, and digital disease detection.

scholarly journals The academic viewpoint on Big data and patient data ownership (as seen in the scientific literature)

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
I Mircheva ◽  
M Mirchev
Keyword(s):  
Public Health ◽  
Big Data ◽  
Medical Research ◽  
Information And Communication Technologies ◽  
Patient Information ◽  
Scientific Literature ◽  
Medical Data ◽  
Patient Data ◽  
Academic Community ◽  
Ethical Challenges

Abstract Background Ownership of patient information in the context of Big Data is a relatively new problem, apparently not yet fully understood. There are not enough publications on the subject. Since the topic is interdisciplinary, incorporating legal, ethical, medical and aspects of information and communication technologies, a slightly more sophisticated analysis of the issue is needed. Aim To determine how the medical academic community perceives the issue of ownership of patient information in the context of Big Data. Methods Literature search for full text publications, indexed in PubMed, Springer, ScienceDirect and Scopus identified only 27 appropriate articles authored by academicians and corresponding to three focus areas: problem (ownership); area (healthcare); context (Big Data). Three major aspects were studied: scientific area of publications, aspects and academicians' perception of ownership in the context of Big Data. Results Publications are in the period 2014 - 2019, 37% published in health and medical informatics journals, 30% in medicine and public health, 19% in law and ethics; 78% authored by American and British academicians, highly cited. The majority (63%) are in the area of scientific research - clinical studies, access and use of patient data for medical research, secondary use of medical data, ethical challenges to Big data in healthcare. The majority (70%) of the publications discuss ownership in ethical and legal aspects and 67% see ownership as a challenge mostly to medical research, access control, ethics, politics and business. Conclusions Ownership of medical data is seen first and foremost as a challenge. Addressing this challenge requires the combined efforts of politicians, lawyers, ethicists, computer and medical professionals, as well as academicians, sharing these efforts, experiences and suggestions. However, this issue is neglected in the scientific literature. Publishing may help in open debates and adequate policy solutions. Key messages Ownership of patient information in the context of Big Data is a problem that should not be marginalized but needs a comprehensive attitude, consideration and combined efforts from all stakeholders. Overcoming the challenge of ownership may help in improving healthcare services, medical and public health research and the health of the population as a whole.

The Future of Nurse Scholarship: The Ethical Challenges

2021 ◽  
Vol 35 (1) ◽  
pp. 25-27
Author(s):  
Constance L. Milton
Keyword(s):  
Public Health ◽  
Big Data ◽  
National Policy ◽  
Nurse Education ◽  
Health Priorities ◽  
Ethical Challenges ◽  
Data Movement ◽  
Ethical Implications ◽  
Policy Statements ◽  
Competency Based

The advancement of a healthcare discipline is reliant on the disciplines’ ability to produce rigorous scholarship activities and products. The healthcare disciplines, especially nursing, are facing ever-changing priorities as shortages loom and exhaustion permeates the climate. Empirical public health priorities during the pandemic have dominated professional healthcare literature and global health communications. This article shall offer ethical implications for the discipline of nursing as it seeks the advancement of scholarship. Topics include straight-thinking issues surrounding nursing and medicine national policy statements, the big data movement, and evolutionary return of competency-based nurse education.

scholarly journals Role of the Built and Online Social Environments on Expression of Dining on Instagram

2020 ◽  
Vol 17 (3) ◽  
pp. 735 ◽  
Author(s):  
Vishwali Mhasawade ◽  
Anas Elghafari ◽  
Dustin T. Duncan ◽  
Rumi Chunara
Keyword(s):  
Public Health ◽  
Built Environment ◽  
Online Social Networks ◽  
Health Research ◽  
Public Health Research ◽  
Time Of Day ◽  
Social Environments ◽  
Health Related Behaviors ◽  
Health Related

Online social communities are becoming windows for learning more about the health of populations, through information about our health-related behaviors and outcomes from daily life. At the same time, just as public health data and theory has shown that aspects of the built environment can affect our health-related behaviors and outcomes, it is also possible that online social environments (e.g., posts and other attributes of our online social networks) can also shape facets of our life. Given the important role of the online environment in public health research and implications, factors which contribute to the generation of such data must be well understood. Here we study the role of the built and online social environments in the expression of dining on Instagram in Abu Dhabi; a ubiquitous social media platform, city with a vibrant dining culture, and a topic (food posts) which has been studied in relation to public health outcomes. Our study uses available data on user Instagram profiles and their Instagram networks, as well as the local food environment measured through the dining types (e.g., casual dining restaurants, food court restaurants, lounges etc.) by neighborhood. We find evidence that factors of the online social environment (profiles that post about dining versus profiles that do not post about dining) have different influences on the relationship between a user’s built environment and the social dining expression, with effects also varying by dining types in the environment and time of day. We examine the mechanism of the relationships via moderation and mediation analyses. Overall, this study provides evidence that the interplay of online and built environments depend on attributes of said environments and can also vary by time of day. We discuss implications of this synergy for precisely-targeting public health interventions, as well as on using online data for public health research.

scholarly journals Technical Blossom in Medical Care: The Influence of Big Data Platform on Medical Innovation

2020 ◽  
Vol 17 (2) ◽  
pp. 516 ◽  
Author(s):  
Bai Liu ◽  
Shuyan Guo ◽  
Bin Ding
Keyword(s):  
Public Health ◽  
Big Data ◽  
Public Health Research ◽  
Medical Innovation ◽  
Promoting Effect ◽  
Exogenous Shock ◽  
Listed Firms ◽  
Data Platform ◽  
Medical Big Data ◽  
Medical Policy

Medical innovation has consistently been an essential subject and a source of support for public health research. Furthermore, improving the level of medical research and development is of great concern in this field. This paper highlights the role of big data in public medical innovation. Based on a sample of China’s listed firms in the medical industry from 2013 to 2018, this paper explores the exogenous shock effect of China’s big data medical policy. Results show that the construction of the medical big data platform effectively promotes innovation investment and the innovation patent of medical firms. In addition, the heterogeneity of this promoting effect is reflected in firm size through the overcoming of different innovation bottlenecks. The research conclusions support the positive significance of the macro-led implementation of the medical big data platform, and suggest that the positive economic externalities generated by this policy are critical to public health.

scholarly journals Factors Related to Personal Health Data Sharing: Data Usefulness, Sensitivity and Anonymity

2021 ◽  
Author(s):  
Samar Helou ◽  
Victoria Abou-Khalil ◽  
Elie El Helou ◽  
Ken Kiyono
Keyword(s):  
Public Health ◽  
Data Sharing ◽  
Health Research ◽  
Online Survey ◽  
Public Health Research ◽  
Health Data ◽  
Perceived Usefulness ◽  
Personal Health ◽  
Sociodemographic Characteristics ◽  
Region Of Residence

Using an online survey, we examined the relationships between the perceived usefulness, sensitivity, and anonymity of personal health data and people’s willingness to share it with researchers. An analysis of 112 responses showed that people’s willingness and perceptions are related to the type of the data, their trust in the data’s anonymity, and their personal sociodemographic characteristics. In general, we found that people do not completely trust that their identities remain anonymous when sharing data anonymously with researchers. We also found that they are more willing to share personal health data with researchers if they perceive it as useful for public health research, not sensitive, and if they trust that their identity will remain anonymous after sharing it. We also found that people’s age, gender, occupation, and region of residence may be related to their perceptions regarding the sharing of personal health data.

A Systematic Literature Review of Ethical Challenges Related to Medical and Public Health Data Sharing in China

2021 ◽  
pp. 155626462110402
Author(s):  
Xiaojie Li ◽  
Yali Cong
Keyword(s):  
Public Health ◽  
Literature Review ◽  
Data Sharing ◽  
Systematic Literature Review ◽  
Health Data ◽  
Ethical Challenges ◽  
Public Health Data ◽  
Educational Implications ◽  
Full Text Screening ◽  
Final Synthesis

Although stakeholders in China have begun promoting medical and public health data sharing, a large portion of data cannot flow freely across research teams and borders and be converted into “big data.” To identify the ethical challenges that are considered to hinder medical and public health data sharing, we performed a systematic literature review pertaining to medical and health data sharing in China. A total of 2959 unique records were retrieved through the database search, 61 of which were included in the final synthesis after full-text screening. This review provides an overview of the current ethical challenges and barriers involved in data sharing for healthcare purposes in China. Through the systematic review of evidence from peer-reviewed literature and dissertations, we identified barriers and ethical challenges grouped in a taxonomy of capacity building needs, balancing different stakeholders’ interests, scientific and social value, and the data subjects’ rights, public trust and engagement. Best practices and educational implications were suggested based on our findings.

scholarly journals Using Twitter for Public Health Surveillance from Monitoring and Prediction to Public Response

Data ◽  
2018 ◽  
Vol 4 (1) ◽  
pp. 6 ◽  
Author(s):  
Sophie Jordan ◽  
Sierra Hovet ◽  
Isaac Fung ◽  
Hai Liang ◽  
King-Wa Fu ◽  
...  
Keyword(s):  
Public Health ◽  
Public Health Surveillance ◽  
Public Health Research ◽  
Global Scale ◽  
Health Surveillance ◽  
Short Text ◽  
Related Information ◽  
Twitter Data ◽  
Public Health Information ◽  
Health Related

Twitter is a social media platform where over 500 million people worldwide publish their ideas and discuss diverse topics, including their health conditions and public health events. Twitter has proved to be an important source of health-related information on the Internet, given the amount of information that is shared by both citizens and official sources. Twitter provides researchers with a real-time source of public health information on a global scale, and can be very important in public health research. Classifying Twitter data into topics or categories is helpful to better understand how users react and communicate. A literature review is presented on the use of mining Twitter data or similar short-text datasets for public health applications. Each method is analyzed for ways to use Twitter data in public health surveillance. Papers in which Twitter content was classified according to users or tweets for better surveillance of public health were selected for review. Only papers published between 2010–2017 were considered. The reviewed publications are distinguished by the methods that were used to categorize the Twitter content in different ways. While comparing studies is difficult due to the number of different methods that have been used for applying Twitter and interpreting data, this state-of-the-art review demonstrates the vast potential of utilizing Twitter for public health surveillance purposes.

scholarly journals Health Data for Public Health: Towards New Ways of Combining Data Sources to Support Research Efforts in Europe

2017 ◽  
Vol 26 (01) ◽  
pp. 235-240
Author(s):  
A. Burgun ◽  
E. Bernal-Delgado ◽  
W. Kuchinke ◽  
T. van Staa ◽  
J. Cunningham ◽  
...  
Keyword(s):  
Public Health ◽  
Administrative Data ◽  
Public Health Research ◽  
Health Data ◽  
Nordic Countries ◽  
Administrative Databases ◽  
Health Administrative Data ◽  
Combining Data ◽  
Data Provision ◽  
The Uk

Summary Objectives: To present the European landscape regarding the re-use of health administrative data for research. Methods: We present some collaborative projects and solutions that have been developed by Nordic countries, Italy, Spain, France, Germany, and the UK, to facilitate access to their health data for research purposes. Results: Research in public health is transitioning from siloed systems to more accessible and re-usable data resources. Following the example of the Nordic countries, several European countries aim at facilitating the re-use of their health administrative databases for research purposes. However, the ecosystem is still a complex patchwork, with different rules, policies, and processes for data provision. Conclusion: The challenges are such that with the abundance of health administrative data, only a European, overarching public health research infrastructure, is able to efficiently facilitate access to this data and accelerate research based on these highly valuable resources.

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