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Khosravi M, Mojtabaeian SM, Zare Z. Factors influencing the use of big data within healthcare services: a systematic review. HEALTH INF MANAG J 2025; 54:190-201. [PMID: 39166442 DOI: 10.1177/18333583241270484] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 08/23/2024]
Abstract
Background: The emergence of big data holds the promise of aiding healthcare providers by identifying patterns and converting vast quantities of data into actionable insights facilitating the provision of precision medicine and decision-making. Objective: This study aimed to investigate the factors influencing use of big data within healthcare services to facilitate their use. Method: A systematic review was conducted in February 2024, adhering to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Database searches for articles published between 01 January 2020 and 18 February 2024 and included PubMed, Scopus, ProQuest and Cochrane Library. The Authority, Accuracy, Coverage, Objectivity, Date, Significance ( AACODS) checklist was used to evaluate the quality of the included articles. Subsequently, a thematic analysis was conducted on the findings of the review, using the Boyatzis approach. Results: A final selection of 46 studies were included in this systematic review. A significant proportion of these studies demonstrated acceptable quality, and the level of bias was deemed satisfactory. Thematic analysis identified seven major themes that influenced the use of big data in healthcare services. These themes were grouped into four primary categories: performance expectancy, effort expectancy, social influence, and facilitating conditions. Factors associated with "effort expectancy" were the most highly cited in the included studies (67%), while those related to "social influence" received the fewest citations (15%). Conclusion: This study underscored the critical role of "effort expectancy" factors, particularly those under the theme of "data complexity and management," in the process of using big data in healthcare services. Implications: Results of this study provide groundwork for future research to explore facilitators and barriers to using big data in health care, particularly in relation to data complexity and the efficient and effective management of big data, with significant implications for healthcare administrators and policymakers.
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Affiliation(s)
| | | | - Zahra Zare
- Shiraz University of Medical Sciences, Iran
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2
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Ntais C, Talias MA. Unveiling the Value of Meta-Analysis in Disease Prevention and Control: A Comprehensive Review. MEDICINA (KAUNAS, LITHUANIA) 2024; 60:1629. [PMID: 39459416 PMCID: PMC11509094 DOI: 10.3390/medicina60101629] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 08/21/2024] [Revised: 10/01/2024] [Accepted: 10/03/2024] [Indexed: 10/28/2024]
Abstract
Given the plethora of studies today that focus on the same topic, clinicians and other healthcare professionals increasingly rely on meta-analysis to aid in their evidence-based decision-making. This research method, which combines data from multiple studies to produce a single, more precise estimate of effect size, is invaluable for synthesizing evidence, resolving inconsistencies and guiding clinical practice and public health policies. Especially in disease prevention and control, meta-analysis has emerged as a critical tool. Meta-analysis is particularly valuable in assessing the effectiveness of preventive interventions such as vaccines, lifestyle modifications and screening programs. It provides robust evidence that supports the implementation of effective preventive measures and the discontinuation of ineffective or harmful ones. Furthermore, meta-analysis provides evidence to develop clinical practice guidelines, ensuring patients receive evidence-based treatments. In addition, public health policies aimed at disease prevention and control often rely on evidence from meta-analyses, which provide the data needed to justify and design large-scale public health initiatives. This comprehensive review delves into the role of meta-analysis in disease prevention and control, exploring its advantages, applications, challenges and overall impact on guiding clinical practice and public health policies. Through case studies and an examination of future directions, this paper underscores the pivotal role of meta-analysis in disease prevention and control.
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Affiliation(s)
| | - Michael A. Talias
- Healthcare Management Program, School of Economics & Management, Open University of Cyprus, Nicosia 2220, Cyprus;
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3
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Kilpeläinen K, Ståhl T, Ylöstalo T, Keski-Kuha T, Nyrhinen R, Koponen P, Gissler M. Citizens' digital footprints to support health promotion at the local level-PUHTI study, Finland. Eur J Public Health 2024; 34:676-681. [PMID: 38573194 PMCID: PMC11293830 DOI: 10.1093/eurpub/ckae053] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 04/05/2024] Open
Abstract
BACKGROUND We aimed to explore to the possibilities of utilizing automatically accumulating data on health-owned for example by local companies and non-governmental organizations-to complement traditional health data sources in health promotion work at the local level. METHODS Data for the PUHTI study consisted of postal code level information on sport license holders, drug purchase and sales advertisements in a TOR online underground marketplace, and grocery sales in Tampere. Additionally, open population register data were utilized. An interactive reporting tool was prepared to show the well-being profile for each postal code area. Feedback from the tool's end-users was collected in interviews. RESULTS The study showed that buying unhealthy food and alcohol, selling or buying drugs, and participating in organized sport activities differed by postal code areas according to its socioeconomic profile in the city of Tampere. The health and well-being planners and managers of Tampere found that the new type of data brought added value for the health promotion work at the local level. They perceived the interactive reporting tool as a good tool for planning, managing, allocating resources and preparing forecasts. CONCLUSIONS Traditional health data collection methods-administrative registers and health surveys-are the cornerstone of local health promotion work. Digital footprints, including data accumulated about people's everyday lives outside the health service system, can provide additional information on health behaviour for various population groups. Combining new sources with traditional health data opens a new perspective for health promotion work at local and regional levels.
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Affiliation(s)
- Katri Kilpeläinen
- Department of Public Health and Welfare, Finnish Institute for Health and Welfare, Helsinki, Finland
| | - Timo Ståhl
- Department of Public Health and Welfare, Finnish Institute for Health and Welfare, Helsinki, Finland
| | - Tiina Ylöstalo
- Department of Knowledge Brokers, Finnish Institute for Health and Welfare, Helsinki, Finland
| | - Teemu Keski-Kuha
- Department of Public Health and Welfare, Finnish Institute for Health and Welfare, Helsinki, Finland
| | - Riku Nyrhinen
- Department of Public Health and Welfare, Finnish Institute for Health and Welfare, Helsinki, Finland
| | - Päivikki Koponen
- Department of Public Health and Welfare, Finnish Institute for Health and Welfare, Helsinki, Finland
| | - Mika Gissler
- Department of Knowledge Brokers, Finnish Institute for Health and Welfare, Helsinki, Finland
- Region Stockholm, Academic Primary Health Care Centre, Stockholm, Sweden
- Department of Molecular Medicine and Surgery, Karolinska Institutet, Stockholm, Sweden
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4
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Qiao S, Li X, Olatosi B, Young SD. Utilizing Big Data analytics and electronic health record data in HIV prevention, treatment, and care research: a literature review. AIDS Care 2024; 36:583-603. [PMID: 34260325 DOI: 10.1080/09540121.2021.1948499] [Citation(s) in RCA: 1] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/13/2021] [Accepted: 06/22/2021] [Indexed: 01/07/2023]
Abstract
Propelled by the transformative power of modern information and communication technologies, digitalization of data, and the increasing affordability of high-performance computing, Big Data science has brought forth revolutionary advancement in many areas of business, industry, health, and medicine. The HIV research and care service community is no exception to the benefits from the availability and utilization of Big Data analytics. Electronic health record (EHR) data (e.g., administrative and billing data, electronic medical records, or other digital records of information pertinent to individual or population health) are an essential source of health and disease outcome data because of the large amount of real-world, comprehensive, and often longitudinal data, which provide a good opportunity for leveraging advanced Big Data analytics in addressing challenges in HIV prevention, treatment, and care. This review focuses on studies that apply Big Data analytics to EHR data with aims to synthesize the HIV-related issues that EHR data studies can tackle, identify challenges in the utilization of EHR data in HIV research and practice, and discuss future needs and directions that can realize the promising potential role of Big Data in ending the HIV epidemic.
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Affiliation(s)
- Shan Qiao
- South Carolina SmartState Center for Healthcare Quality (CHQ), Columbia, SC, USA
- University of South Carolina Big Data Health Science Center, Columbia, SC, USA
- Department of Health Promotion, Education, and Behavior, Arnold School of Public Health, University of South Carolina, Columbia, SC, USA
| | - Xiaoming Li
- South Carolina SmartState Center for Healthcare Quality (CHQ), Columbia, SC, USA
- University of South Carolina Big Data Health Science Center, Columbia, SC, USA
- Department of Health Promotion, Education, and Behavior, Arnold School of Public Health, University of South Carolina, Columbia, SC, USA
| | - Bankole Olatosi
- South Carolina SmartState Center for Healthcare Quality (CHQ), Columbia, SC, USA
- University of South Carolina Big Data Health Science Center, Columbia, SC, USA
- Department of Health Services Policy and Management, Arnold School of Public Health, University of South Carolina, Columbia, SC, USA
| | - Sean D Young
- Department of Emergency Medicine, Department of Informatics, Institute for Prediction Technology, University of California, Irvine, CA, USA
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5
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Masum H, Bourne PE. Ten simple rules for humane data science. PLoS Comput Biol 2023; 19:e1011698. [PMID: 38127691 PMCID: PMC10734991 DOI: 10.1371/journal.pcbi.1011698] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/23/2023] Open
Affiliation(s)
- Hassan Masum
- Waterloo Institute for Complexity and Innovation, Waterloo, Canada
| | - Philip E. Bourne
- School of Data Science, University of Virginia, Virginia, United States of America
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6
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Ferretti A, Vayena E. In the shadow of privacy: Overlooked ethical concerns in COVID-19 digital epidemiology. Epidemics 2022; 41:100652. [PMID: 36356477 PMCID: PMC9635223 DOI: 10.1016/j.epidem.2022.100652] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/08/2022] [Revised: 10/27/2022] [Accepted: 11/03/2022] [Indexed: 11/06/2022] Open
Abstract
The COVID-19 pandemic witnessed a surge in the use of health data to combat the public health threat. As a result, the use of digital technologies for epidemic surveillance showed great potential to collect vast volumes of data, and thereby respond more effectively to the healthcare challenges. However, the deployment of these technologies raised legitimate concerns over risks to individual privacy. While the ethical and governance debate focused primarily on these concerns, other relevant issues remained in the shadows. Leveraging examples from the COVID-19 pandemic, this perspective article aims to investigate these overlooked issues and their ethical implications. Accordingly, we explore the problem of the digital divide, the role played by tech companies in the public health domain and their power dynamics with the government and public research sector, and the re-use of personal data, especially in the absence of adequate public involvement. Even if individual privacy is ensured, failure to properly engage with these other issues will result in digital epidemiology tools that undermine equity, fairness, public trust, just distribution of benefits, autonomy, and minimization of group harm. On the contrary, a better understanding of these issues, a broader ethical and data governance approach, and meaningful public engagement will encourage adoption of these technologies and the use of personal data for public health research, thus increasing their power to tackle epidemics.
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Affiliation(s)
- Agata Ferretti
- Correspondence to: ETH Zurich, Hottingerstrasse 10 (HOA), 8092 Zurich, Switzerland
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7
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Kerr JI, Naegelin M, Benk M, V Wangenheim F, Meins E, Viganò E, Ferrario A. Investigating Employees’ Concerns and Wishes for Digital Stress Management Interventions with Value Sensitive Design: Mixed Methods Study (Preprint). J Med Internet Res 2022; 25:e44131. [PMID: 37052996 PMCID: PMC10141316 DOI: 10.2196/44131] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/07/2022] [Revised: 02/21/2023] [Accepted: 03/12/2023] [Indexed: 03/14/2023] Open
Abstract
BACKGROUND Work stress places a heavy economic and disease burden on society. Recent technological advances include digital health interventions for helping employees prevent and manage their stress at work effectively. Although such digital solutions come with an array of ethical risks, especially if they involve biomedical big data, the incorporation of employees' values in their design and deployment has been widely overlooked. OBJECTIVE To bridge this gap, we used the value sensitive design (VSD) framework to identify relevant values concerning a digital stress management intervention (dSMI) at the workplace, assess how users comprehend these values, and derive specific requirements for an ethics-informed design of dSMIs. VSD is a theoretically grounded framework that front-loads ethics by accounting for values throughout the design process of a technology. METHODS We conducted a literature search to identify relevant values of dSMIs at the workplace. To understand how potential users comprehend these values and derive design requirements, we conducted a web-based study that contained closed and open questions with employees of a Swiss company, allowing both quantitative and qualitative analyses. RESULTS The values health and well-being, privacy, autonomy, accountability, and identity were identified through our literature search. Statistical analysis of 170 responses from the web-based study revealed that the intention to use and perceived usefulness of a dSMI were moderate to high. Employees' moderate to high health and well-being concerns included worries that a dSMI would not be effective or would even amplify their stress levels. Privacy concerns were also rated on the higher end of the score range, whereas concerns regarding autonomy, accountability, and identity were rated lower. Moreover, a personalized dSMI with a monitoring system involving a machine learning-based analysis of data led to significantly higher privacy (P=.009) and accountability concerns (P=.04) than a dSMI without a monitoring system. In addition, integrability, user-friendliness, and digital independence emerged as novel values from the qualitative analysis of 85 text responses. CONCLUSIONS Although most surveyed employees were willing to use a dSMI at the workplace, there were considerable health and well-being concerns with regard to effectiveness and problem perpetuation. For a minority of employees who value digital independence, a nondigital offer might be more suitable. In terms of the type of dSMI, privacy and accountability concerns must be particularly well addressed if a machine learning-based monitoring component is included. To help mitigate these concerns, we propose specific requirements to support the VSD of a dSMI at the workplace. The results of this work and our research protocol will inform future research on VSD-based interventions and further advance the integration of ethics in digital health.
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Affiliation(s)
- Jasmine I Kerr
- Mobiliar Lab for Analytics at ETH Zurich, Department of Management, Technology, and Economics, ETH Zurich, Zürich, Switzerland
- Chair of Technology Marketing, Department of Management, Technology, and Economics, ETH Zurich, Zurich, Switzerland
| | - Mara Naegelin
- Mobiliar Lab for Analytics at ETH Zurich, Department of Management, Technology, and Economics, ETH Zurich, Zürich, Switzerland
- Chair of Technology Marketing, Department of Management, Technology, and Economics, ETH Zurich, Zurich, Switzerland
| | - Michaela Benk
- Mobiliar Lab for Analytics at ETH Zurich, Department of Management, Technology, and Economics, ETH Zurich, Zürich, Switzerland
- Chair of Technology Marketing, Department of Management, Technology, and Economics, ETH Zurich, Zurich, Switzerland
| | - Florian V Wangenheim
- Chair of Technology Marketing, Department of Management, Technology, and Economics, ETH Zurich, Zurich, Switzerland
| | - Erika Meins
- Mobiliar Lab for Analytics at ETH Zurich, Department of Management, Technology, and Economics, ETH Zurich, Zürich, Switzerland
| | - Eleonora Viganò
- Institute of Biomedical Ethics and History of Medicine, University of Zurich, Zurich, Switzerland
| | - Andrea Ferrario
- Mobiliar Lab for Analytics at ETH Zurich, Department of Management, Technology, and Economics, ETH Zurich, Zürich, Switzerland
- Chair of Technology Marketing, Department of Management, Technology, and Economics, ETH Zurich, Zurich, Switzerland
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Rebuilding Stakeholder Confidence in Health-Relevant Big Data Applications: A Social Representations Perspective. INFORMATION 2022. [DOI: 10.3390/info13090441] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/16/2022] Open
Abstract
Big data applications are at the epicentre of recent breakthroughs in digital health. However, controversies over privacy, security, ethics, accountability, and data governance have tarnished stakeholder trust, leaving health-relevant big data projects under threat, delayed, or abandoned. Taking the notion of big data as social construction, this work explores the social representations of the big data concept from the perspective of stakeholders in Kenya’s digital health environment. Through analysing the similarities and differences in the way health professionals and information technology (IT) practitioners comprehend the idea of big data, we draw strategic implications for restoring confidence in big data initiatives. Respondents associated big data with a multiplicity of concepts and were conflicted in how they represented big data’s benefits and challenges. On this point, we argue that peculiarities and nuances in how diverse players view big data contribute to the erosion of trust and the need to revamp stakeholder engagement practices. Specifically, decision makers should complement generalised informational campaigns with targeted, differentiated messages designed to address data responsibility, access, control, security, or other issues relevant to a specialised but influential community.
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9
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Singh L, Gresenz CR, Wang Y, Hu S. Assessing Social Media Data as a Resource for Firearm Research: Analysis of Tweets Pertaining to Firearm Deaths. J Med Internet Res 2022; 24:e38319. [PMID: 36006693 PMCID: PMC9459834 DOI: 10.2196/38319] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/29/2022] [Revised: 06/28/2022] [Accepted: 07/15/2022] [Indexed: 11/13/2022] Open
Abstract
BACKGROUND Historic constraints on research dollars and reliable information have limited firearm research. At the same time, interest in the power and potential of social media analytics, particularly in health contexts, has surged. OBJECTIVE The aim of this study is to contribute toward the goal of establishing a foundation for how social media data may best be used, alone or in conjunction with other data resources, to improve the information base for firearm research. METHODS We examined the value of social media data for estimating a firearm outcome for which robust benchmark data exist-specifically, firearm mortality, which is captured in the National Vital Statistics System (NVSS). We hand curated tweet data from the Twitter application programming interface spanning January 1, 2017, to December 31, 2018. We developed machine learning classifiers to identify tweets that pertain to firearm deaths and develop estimates of the volume of Twitter firearm discussion by month. We compared within-state variation over time in the volume of tweets pertaining to firearm deaths with within-state trends in NVSS-based estimates of firearm fatalities using Pearson linear correlations. RESULTS The correlation between the monthly number of firearm fatalities measured by the NVSS and the monthly volume of tweets pertaining to firearm deaths was weak (median 0.081) and highly dispersed across states (range -0.31 to 0.535). The median correlation between month-to-month changes in firearm fatalities in the NVSS and firearm deaths discussed in tweets was moderate (median 0.30) and exhibited less dispersion among states (range -0.06 to 0.69). CONCLUSIONS Our findings suggest that Twitter data may hold value for tracking dynamics in firearm-related outcomes, particularly for relatively populous cities that are identifiable through location mentions in tweet content. The data are likely to be particularly valuable for understanding firearm outcomes not currently measured, not measured well, or not measurable through other available means. This research provides an important building block for future work that continues to develop the usefulness of social media data for firearm research.
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Affiliation(s)
- Lisa Singh
- Department of Computer Science, Massive Data Institute, Georgetown University, Washington, DC, United States
| | - Carole Roan Gresenz
- McCourt School of Public Policy, School of Health, Georgetown University, Washington, DC, United States
| | - Yanchen Wang
- Department of Computer Science, Georgetown University, Washington, DC, United States
| | - Sonya Hu
- Department of Computer Science, Georgetown University, Washington, DC, United States
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10
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Wei S, Kang B, Bailey DE, Caves K, Lin Y, McConnell ES, Thurow M, Woodward A, Wright-Freeman K, Xue T(M, Corazzini KN. Using Technology to Measure Older Adults' Social Networks for Health and Well-Being: A Scoping Review. THE GERONTOLOGIST 2022; 62:e418-e430. [PMID: 33754150 PMCID: PMC8083702 DOI: 10.1093/geront/gnab039] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/18/2020] [Indexed: 11/13/2022] Open
Abstract
BACKGROUND AND OBJECTIVES Social networks affect the health and well-being of older adults. Advancements in technology (e.g., digital devices and mHealth) enrich our ability to collect social networks and health data. The purpose of this scoping review was to identify and map the use of technology in measuring older adults' social networks for health and social care. RESEARCH DESIGN AND METHODS The Joanna Briggs Institute methodology was followed. PubMed (MEDLINE), Sociological Abstracts, SocINDEX, CINAHL, and Web of Science were searched for relevant articles. Conference abstracts and proceedings were searched via Conference Papers Index, the American Sociological Society, and The Gerontological Society of America. Studies published in English from January 2004 to March 2020 that aimed to improve health or social care for older adults and used technology to measure social networks were included. Data were extracted by 2 independent reviewers using an a priori extraction tool. RESULTS The majority of the 18 reviewed studies were pilot or simulation research conducted in Europe that focused on older adults living in the community. The various types of technologies used can be categorized as environment-based, person-based, and data-based. DISCUSSION AND IMPLICATIONS Technology facilitates objective and longitudinal data collection on the social interactions and activities of older adults. The use of technology to measure older adults' social networks, however, is primarily in an exploratory phase. Multidisciplinary collaborations are needed to overcome operational, analytical, and implementation challenges. Future studies should leverage technologies for addressing social isolation and care for older adults, especially during the coronavirus disease 2019 pandemic.
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Affiliation(s)
- Sijia Wei
- School of Nursing, Duke University, Durham, NC, USA
| | - Bada Kang
- School of Nursing, Duke University, Durham, NC, USA
- Mo-Im Kim Nursing Research Institute, Yonsei University College of Nursing, Seoul, South Korea
| | | | - Kevin Caves
- Department of Head and Neck Surgery and Communication Sciences, Duke University, Durham, NC, USA
- Pratt School of Engineering, Duke University, Durham, NC, USA
| | - Yufen Lin
- School of Nursing, Duke University, Durham, NC, USA
| | - Eleanor S McConnell
- School of Nursing, Duke University, Durham, NC, USA
- Geriatric Research, Education, and Clinical Center, Durham Veterans Affairs Health Care System, Durham, NC, USA
| | - Maria Thurow
- Department of Biology, Carleton College, Northfield, MN, USA
| | - Amanda Woodward
- School of Nursing, Duke University, Durham, NC, USA
- Lane Medical Library & Knowledge Management Center, Stanford University, Stanford, CA, USA
| | | | - Tingzhong (Michelle) Xue
- School of Nursing, Duke University, Durham, NC, USA
- Geriatric Research, Education, and Clinical Center, Durham Veterans Affairs Health Care System, Durham, NC, USA
| | - Kirsten N Corazzini
- School of Nursing, Duke University, Durham, NC, USA
- School of Nursing, University of Maryland, Baltimore, MD, USA
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Park A. Tweets Related to Motivation and Physical Activity for Obesity-Related Behavior Change: Descriptive Analysis. J Med Internet Res 2022; 24:e15055. [PMID: 35857347 PMCID: PMC9350819 DOI: 10.2196/15055] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/15/2019] [Revised: 01/04/2021] [Accepted: 06/23/2022] [Indexed: 11/13/2022] Open
Abstract
BACKGROUND Obesity is one of the greatest modern public health problems, due to the associated health and economic consequences. Decreased physical activity is one of the main societal changes driving the current obesity pandemic. OBJECTIVE Our goals are to fill a gap in the literature and study whether users organically utilize a social media platform, Twitter, for providing motivation. We examine the topics of messages and social network structures on Twitter. We discuss social media's potential for providing peer support and then draw insights to inform the development of interventions for long-term health-related behavior change. METHODS We examined motivational messages related to physical activity on Twitter. First, we collected tweets related to physical activity. Second, we analyzed them using (1) a lexicon-based approach to extract and characterize motivation-related tweets, (2) a thematic analysis to examine common themes in retweets, and (3) topic models to understand prevalent factors concerning motivation and physical activity on Twitter. Third, we created 2 social networks to investigate organically arising peer-support network structures for sustaining physical activity and to form a deeper understanding of the feasibility of these networks in a real-world context. RESULTS We collected over 1.5 million physical activity-related tweets posted from August 30 to November 6, 2018. A relatively small percentage of the tweets mentioned the term motivation; many of these were made on Mondays or during morning or late morning hours. The analysis of retweets showed that the following three themes were commonly conveyed on the platform: (1) using a number of different types of motivation (self, process, consolation, mental, or quotes), (2) promoting individuals or groups, and (3) sharing or requesting information. Topic models revealed that many of these users were weightlifters or people trying to lose weight. Twitter users also naturally forged relations, even though 98.12% (2824/2878) of these users were in different physical locations. CONCLUSIONS This study fills a knowledge gap on how individuals organically use social media to encourage and sustain physical activity. Elements related to peer support are found in the organic use of social media. Our findings suggest that geographical location is less important for providing peer support as long as the support provides motivation, despite users having few factors in common (eg, the weather) affecting their physical activity. This presents a unique opportunity to identify successful motivation-providing peer support groups in a large user base. However, further research on the effects in a real-world context, as well as additional design and usability features for improving user engagement, are warranted to develop a successful intervention counteracting the current obesity pandemic. This is especially important for young adults, the main user group for social media, as they develop lasting health-related behaviors.
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Affiliation(s)
- Albert Park
- Department of Software and Information Systems, College of Computing and Informatics, University of North Carolina-Charlotte, Charlotte, NC, United States
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12
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Pyrrho M, Cambraia L, de Vasconcelos VF. Privacy and Health Practices in the Digital Age. THE AMERICAN JOURNAL OF BIOETHICS : AJOB 2022; 22:50-59. [PMID: 35254963 DOI: 10.1080/15265161.2022.2040648] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 05/12/2023]
Abstract
Increasing privacy concerns are arising from expanding use of aggregated personal information in health practices. Conversely, in light of the promising benefits of data driven healthcare, privacy is being frequently dismissed as outdated, costly and ultimately egotistical. This paper aims to review the theoretical framework on privacy in order to overcome the often simplistic debate between the primacy of individual or collective interests. As a result, it is argued that although privacy can be understood as freedom of personal choice in matters of sharing intimacy, it is foundational to both community belonging and to social and political organizations at large. Ethical decisions on the use of data analytics technologies in health practices should also take into account the social effects of violating privacy.
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13
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Fritzsche MC, Buyx AM, Hangel N. Mapping ethical and social aspects of biomarker research and its application in atopic dermatitis and psoriasis - A systematic review of reason. J Eur Acad Dermatol Venereol 2022; 36:1201-1213. [PMID: 35366351 DOI: 10.1111/jdv.18128] [Citation(s) in RCA: 7] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/09/2021] [Accepted: 03/15/2022] [Indexed: 11/27/2022]
Abstract
Biomarker research is associated with high hopes for atopic dermatitis/psoriasis research. Although various effective treatments have been developed, many challenges remain concerning diagnostics and the development of targeted treatments, but also regarding a number of ethical and social issues. In this paper, building on a systematic literature review and review of reason, we examine the ethical and social debate on biomarker research for atopic dermatitis/psoriasis. We discuss topics such as risks and benefits of stratification of patient groups, ethical aspects of big data and advanced analytics for biomarker use in atopic dermatitis/psoriasis. Our systematic literature review of reason, based on established methodological standards, includes argument-based ethics publications and scientific literature with implicitly ethically relevant aspects. The first search of biomarker research in dermatology and adjacent fields (e.g., oncology) resulted in a large amount of literature concerning general normative aspects of biomarker research, but suggested a lack of explicit argument-based ethical literature in atopic dermatitis/psoriasis research. We therefore conducted a second systematic search, focusing specifically on atopic dermatitis/psoriasis biomarker research. The 43 relevant articles identified through both systematic searches were clustered into three topic groups: (1) ethical aspects of stratification and precision medicine, (2) digital ethics, and (3) research ethics with a focus on complexity and validation. We found that compared to other fields, such as cancer research, the ethical aspects of atopic dermatitis/psoriasis are rarely explained and addressed in detail. In particular, more work is required on scientific standards, digital ethics and responsible clinical application of biomarkers for atopic dermatitis/psoriasis, patient participation, and ethical implications of biomarker use for children or young people with atopic dermatitis/psoriasis. We close with suggestions on how to address the ethical and social dimension of atopic dermatitis/psoriasis research and practice more directly in future.
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Affiliation(s)
- M-Ch Fritzsche
- Institute for History and Ethics in Medicine, Technical University of Munich, Munich, Germany
| | - A M Buyx
- Institute for History and Ethics in Medicine, Technical University of Munich, Munich, Germany
| | - N Hangel
- Institute for History and Ethics in Medicine, Technical University of Munich, Munich, Germany
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14
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SHIFTing artificial intelligence to be responsible in healthcare: A systematic review. Soc Sci Med 2022; 296:114782. [DOI: 10.1016/j.socscimed.2022.114782] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/17/2021] [Revised: 02/02/2022] [Accepted: 02/03/2022] [Indexed: 12/12/2022]
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15
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Iyamu I, Gómez-Ramírez O, Xu AXT, Chang HJ, Watt S, Mckee G, Gilbert M. Challenges in the development of digital public health interventions and mapped solutions: Findings from a scoping review. Digit Health 2022; 8:20552076221102255. [PMID: 35656283 PMCID: PMC9152201 DOI: 10.1177/20552076221102255] [Citation(s) in RCA: 24] [Impact Index Per Article: 8.0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/14/2023] Open
Abstract
Background "Digital public health" has emerged from an interest in integrating digital technologies into public health. However, significant challenges which limit the scale and extent of this digital integration in various public health domains have been described. We summarized the literature about these challenges and identified strategies to overcome them. Methods We adopted Arksey and O'Malley's framework (2005) integrating adaptations by Levac et al. (2010). OVID Medline, Embase, Google Scholar, and 14 government and intergovernmental agency websites were searched using terms related to "digital" and "public health." We included conceptual and explicit descriptions of digital technologies in public health published in English between 2000 and June 2020. We excluded primary research articles about digital health interventions. Data were extracted using a codebook created using the European Public Health Association's conceptual framework for digital public health. Results and analysis Overall, 163 publications were included from 6953 retrieved articles with the majority (64%, n = 105) published between 2015 and June 2020. Nontechnical challenges to digital integration in public health concerned ethics, policy and governance, health equity, resource gaps, and quality of evidence. Technical challenges included fragmented and unsustainable systems, lack of clear standards, unreliability of available data, infrastructure gaps, and workforce capacity gaps. Identified strategies included securing political commitment, intersectoral collaboration, economic investments, standardized ethical, legal, and regulatory frameworks, adaptive research and evaluation, health workforce capacity building, and transparent communication and public engagement. Conclusion Developing and implementing digital public health interventions requires efforts that leverage identified strategies to overcome diverse challenges encountered in integrating digital technologies in public health.
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Affiliation(s)
- Ihoghosa Iyamu
- School of Population and Public Health, University of British Columbia, Vancouver, BC, Canada
- British Columbia Centre for Disease Control, Vancouver, BC, Canada
| | - Oralia Gómez-Ramírez
- School of Population and Public Health, University of British Columbia, Vancouver, BC, Canada
- British Columbia Centre for Disease Control, Vancouver, BC, Canada
- CIHR Canadian HIV Trials Network, Vancouver, BC, Canada
| | - Alice XT Xu
- School of Population and Public Health, University of British Columbia, Vancouver, BC, Canada
| | - Hsiu-Ju Chang
- British Columbia Centre for Disease Control, Vancouver, BC, Canada
| | - Sarah Watt
- British Columbia Centre for Disease Control, Vancouver, BC, Canada
| | - Geoff Mckee
- British Columbia Centre for Disease Control, Vancouver, BC, Canada
| | - Mark Gilbert
- School of Population and Public Health, University of British Columbia, Vancouver, BC, Canada
- British Columbia Centre for Disease Control, Vancouver, BC, Canada
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16
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Data protection, data management, and data sharing: Stakeholder perspectives on the protection of personal health information in South Africa. PLoS One 2021; 16:e0260341. [PMID: 34928950 PMCID: PMC8687565 DOI: 10.1371/journal.pone.0260341] [Citation(s) in RCA: 4] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/16/2021] [Accepted: 11/08/2021] [Indexed: 11/19/2022] Open
Abstract
The Protection of Personal Information Act (POPIA) 2013 came into force in South Africa on 1 July 2020. It seeks to strengthen the processing of personal information, including health information. While POPIA is to be welcomed, there are concerns about the impact it will have on the processing of health information. To ensure that the National Health Laboratory Service [NHLS] is compliant with these new strict processing requirements and that compliance does not negatively impact upon its current screening, treatment, surveillance and research mandate, it was decided to consider the development of a NHLS POPIA Code of Conduct for Personal Health. As part of the process of developing such a Code and better understand the challenges faced in the processing of personal health information in South Africa, 19 semi-structured interviews with stakeholders were conducted between June and September 2020. Overall, respondents welcomed the introduction of POPIA. However, they felt that there are tensions between the strengthening of data protection and the use of personal information for individual patient care, treatment programmes, and research. Respondents reported a need to rethink the management of personal health information in South Africa and identified 5 issues needing to be addressed at a national and an institutional level: an understanding of the importance of personal information; an understanding of POPIA and data protection; improve data quality; improve transparency in data use; and improve accountability in data use. The application of POPIA to the processing of personal health information is challenging, complex, and likely costly. However, personal health information must be appropriately managed to ensure the privacy of the data subject is protected, but equally that it is used as a resource in the individual's and wider public interest.
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17
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Zhang Y, Bambrick H, Mengersen K, Tong S, Hu W. Using internet-based query and climate data to predict climate-sensitive infectious disease risks: a systematic review of epidemiological evidence. INTERNATIONAL JOURNAL OF BIOMETEOROLOGY 2021; 65:2203-2214. [PMID: 34075475 DOI: 10.1007/s00484-021-02155-4] [Citation(s) in RCA: 9] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 05/07/2020] [Revised: 05/25/2021] [Accepted: 05/27/2021] [Indexed: 06/12/2023]
Abstract
The use of internet-based query data offers a novel approach to improve disease surveillance and provides timely disease information. This paper systematically reviewed the literature on infectious disease predictions using internet-based query data and climate factors, discussed the current research progress and challenges, and provided some recommendations for future studies. We searched the relevant articles in the PubMed, Scopus, and Web of Science databases between January 2000 and December 2019. We initially included studies that used internet-based query data to predict infectious disease epidemics, then we further filtered and appraised the studies that used both internet-based query data and climate factors. In total, 129 relevant papers were included in the review. The results showed that most studies used a simple descriptive approach (n=80; 62%) to detect epidemics of influenza (including influenza-like illness (ILI)) (n=88; 68%) and dengue (n=9; 7%). Most studies (n=61; 47%) purely used internet search metrics to predict the epidemics of infectious diseases, while only 3 out of the 129 papers included both climate variables and internet-based query data. Our research shows that including internet-based query data and climate variables could better predict climate-sensitive infectious disease epidemics; however, this method has not been widely used to date. Moreover, previous studies did not sufficiently consider the spatiotemporal uncertainty of infectious diseases. Our review suggests that further research should use both internet-based query and climate data to develop predictive models for climate-sensitive infectious diseases based on spatiotemporal models.
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Affiliation(s)
- Yuzhou Zhang
- School of Public Health and Social Work, Institute of Health and Biomedical Innovation, Queensland University of Technology, Brisbane, Queensland, Australia
| | - Hilary Bambrick
- School of Public Health and Social Work, Institute of Health and Biomedical Innovation, Queensland University of Technology, Brisbane, Queensland, Australia
| | - Kerrie Mengersen
- Science and Engineering Faculty, Mathematical Sciences and Centre for Data Science, Queensland University of Technology, Brisbane, Queensland, Australia
| | - Shilu Tong
- School of Public Health and Social Work, Institute of Health and Biomedical Innovation, Queensland University of Technology, Brisbane, Queensland, Australia
- Shanghai Children's Medical Centre, Shanghai Jiao-Tong University, Shanghai, China
- School of Public Health and Institute of Environment and Human Health, Anhui Medical University, Hefei, Anhui, China
- Center for Global Health, School of Public Health, Nanjing Medical University, Nanjing, China
| | - Wenbiao Hu
- School of Public Health and Social Work, Institute of Health and Biomedical Innovation, Queensland University of Technology, Brisbane, Queensland, Australia.
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18
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Althobaiti K. Surveillance in Next-Generation Personalized Healthcare: Science and Ethics of Data Analytics in Healthcare. New Bioeth 2021; 27:295-319. [PMID: 34720071 DOI: 10.1080/20502877.2021.1993055] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/13/2022]
Abstract
Advances in science and technology have allowed for incredible improvements in healthcare. Additionally, the digital revolution in healthcare provides new ways of collecting and storing large volumes of patient data, referred to as big healthcare data. As a result, healthcare providers are now able to use data to gain a deeper understanding of how to treat an individual in what is referred to as personalized healthcare. Regardless, there are several ethical challenges associated with big healthcare data that affect how personalized healthcare is delivered. To highlight these issues, this article will review the role of big data in personalized healthcare while also discussing the ethical challenges associated with it. The article will also discuss public health surveillance, its implications, and the challenges associated with collecting participants' information. The article will proceed by highlighting next generation technologies, including robotics and 3D printing. The article will conclude by providing recommendations on how patient privacy can be protected in next-generation personalized healthcare.
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Affiliation(s)
- Kamal Althobaiti
- Centre for Global Health Ethics, Duquesne University, Pittsburgh, PA, USA
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19
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Zhao IY, Ma YX, Yu MWC, Liu J, Dong WN, Pang Q, Lu XQ, Molassiotis A, Holroyd E, Wong CWW. Ethics, Integrity, and Retributions of Digital Detection Surveillance Systems for Infectious Diseases: Systematic Literature Review. J Med Internet Res 2021; 23:e32328. [PMID: 34543228 PMCID: PMC8530254 DOI: 10.2196/32328] [Citation(s) in RCA: 10] [Impact Index Per Article: 2.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/23/2021] [Revised: 09/14/2021] [Accepted: 09/14/2021] [Indexed: 01/27/2023] Open
Abstract
Background The COVID-19 pandemic has increased the importance of the deployment of digital detection surveillance systems to support early warning and monitoring of infectious diseases. These opportunities create a “double-edge sword,” as the ethical governance of such approaches often lags behind technological achievements. Objective The aim was to investigate ethical issues identified from utilizing artificial intelligence–augmented surveillance or early warning systems to monitor and detect common or novel infectious disease outbreaks. Methods In a number of databases, we searched relevant articles that addressed ethical issues of using artificial intelligence, digital surveillance systems, early warning systems, and/or big data analytics technology for detecting, monitoring, or tracing infectious diseases according to PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines, and further identified and analyzed them with a theoretical framework. Results This systematic review identified 29 articles presented in 6 major themes clustered under individual, organizational, and societal levels, including awareness of implementing digital surveillance, digital integrity, trust, privacy and confidentiality, civil rights, and governance. While these measures were understandable during a pandemic, the public had concerns about receiving inadequate information; unclear governance frameworks; and lack of privacy protection, data integrity, and autonomy when utilizing infectious disease digital surveillance. The barriers to engagement could widen existing health care disparities or digital divides by underrepresenting vulnerable and at-risk populations, and patients’ highly sensitive data, such as their movements and contacts, could be exposed to outside sources, impinging significantly upon basic human and civil rights. Conclusions Our findings inform ethical considerations for service delivery models for medical practitioners and policymakers involved in the use of digital surveillance for infectious disease spread, and provide a basis for a global governance structure. Trial Registration PROSPERO CRD42021259180; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=259180
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Affiliation(s)
- Ivy Y Zhao
- WHO Collaborating Centre for Community Health Services, School of Nursing, The Hong Kong Polytechnic University, Hong Kong SAR, China
| | - Ye Xuan Ma
- Department of Family Medicine and Primary Care, Li Ka Shing Faculty of Medicine, The University of Hong Kong, Hong Kong SAR, China
| | - Man Wai Cecilia Yu
- Department of Family Medicine and Primary Care, Li Ka Shing Faculty of Medicine, The University of Hong Kong, Hong Kong SAR, China
| | - Jia Liu
- Shenzhen Institute of Advanced Technology, Chinese Academy of Sciences, Shenzhen, China
| | - Wei Nan Dong
- Department of Family Medicine and Primary Care, Li Ka Shing Faculty of Medicine, The University of Hong Kong, Hong Kong SAR, China
| | - Qin Pang
- Department of Information Technology, University of Hong Kong-Shenzhen Hospital, Shenzhen, China
| | - Xiao Qin Lu
- School of General Practice and Continuing Education, Capital Medical University, Beijing, China
| | - Alex Molassiotis
- WHO Collaborating Centre for Community Health Services, School of Nursing, The Hong Kong Polytechnic University, Hong Kong SAR, China
| | - Eleanor Holroyd
- School of Clinical Sciences, Auckland University of Technology, Auckland, New Zealand
| | - Chi Wai William Wong
- Department of Family Medicine and Primary Care, Li Ka Shing Faculty of Medicine, The University of Hong Kong, Hong Kong SAR, China.,Department of Family Medicine and Primary Care, University of Hong Kong-Shenzhen Hospital, Shenzhen, China
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20
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Chauhan C, Gullapalli RR. Ethics of AI in Pathology: Current Paradigms and Emerging Issues. THE AMERICAN JOURNAL OF PATHOLOGY 2021; 191:1673-1683. [PMID: 34252382 PMCID: PMC8485059 DOI: 10.1016/j.ajpath.2021.06.011] [Citation(s) in RCA: 36] [Impact Index Per Article: 9.0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Received: 05/18/2021] [Revised: 06/18/2021] [Accepted: 06/24/2021] [Indexed: 02/06/2023]
Abstract
Deep learning has rapidly advanced artificial intelligence (AI) and algorithmic decision-making (ADM) paradigms, affecting many traditional fields of medicine, including pathology, which is a heavily data-centric specialty of medicine. The structured nature of pathology data repositories makes it highly attractive to AI researchers to train deep learning models to improve health care delivery. Additionally, there are enormous financial incentives driving adoption of AI and ADM due to promise of increased efficiency of the health care delivery process. AI, if used unethically, may exacerbate existing inequities of health care, especially if not implemented correctly. There is an urgent need to harness the vast power of AI in an ethically and morally justifiable manner. This review explores the key issues involving AI ethics in pathology. Issues related to ethical design of pathology AI studies and the potential risks associated with implementation of AI and ADM within the pathology workflow are discussed. Three key foundational principles of ethical AI: transparency, accountability, and governance, are described in the context of pathology. The future practice of pathology must be guided by these principles. Pathologists should be aware of the potential of AI to deliver superlative health care and the ethical pitfalls associated with it. Finally, pathologists must have a seat at the table to drive future implementation of ethical AI in the practice of pathology.
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Affiliation(s)
- Chhavi Chauhan
- American Society of Investigative Pathology, Rockville, Maryland
| | - Rama R Gullapalli
- Department of Pathology, University of New Mexico, Albuquerque, New Mexico; Department of Chemical and Biological Engineering, University of New Mexico, Albuquerque, New Mexico.
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21
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Nichol AA, Bendavid E, Mutenherwa F, Patel C, Cho MK. Diverse experts' perspectives on ethical issues of using machine learning to predict HIV/AIDS risk in sub-Saharan Africa: a modified Delphi study. BMJ Open 2021; 11:e052287. [PMID: 34321310 PMCID: PMC8320245 DOI: 10.1136/bmjopen-2021-052287] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/11/2021] [Accepted: 07/19/2021] [Indexed: 01/10/2023] Open
Abstract
OBJECTIVE To better understand diverse experts' views about the ethical implications of ongoing research funded by the National Institutes of Health that uses machine learning to predict HIV/AIDS risk in sub-Saharan Africa (SSA) based on publicly available Demographic and Health Surveys data. DESIGN Three rounds of semi-structured surveys in an online expert panel using a modified Delphi approach. PARTICIPANTS Experts in informatics, African public health and HIV/AIDS and bioethics were invited to participate. MEASURES Perceived importance of or agreement about relevance of ethical issues on 5-point unipolar Likert scales. Qualitative data analysis identified emergent themes related to ethical issues and development of an ethical framework and recommendations for open-ended questions. RESULTS Of the 35 invited experts, 22 participated in the online expert panel (63%). Emergent themes were the inclusion of African researchers in all aspects of study design, analysis and dissemination to identify and address local contextual issues, as well as engagement of communities. Experts focused on engagement with health and science professionals to address risks, benefits and communication of findings. Respondents prioritised the mitigation of stigma to research participants but recognised trade-offs between privacy and the need to disseminate findings to realise public health benefits. Strategies for responsible communication of results were suggested, including careful word choice in presentation of results and limited dissemination to need-to-know stakeholders such as public health planners. CONCLUSION Experts identified ethical issues specific to the African context and to research on sensitive, publicly available data and strategies for addressing these issues. These findings can be used to inform an ethical implementation framework with research stage-specific recommendations on how to use publicly available data for machine learning-based predictive analytics to predict HIV/AIDS risk in SSA.
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Affiliation(s)
- Ariadne A Nichol
- Center for Biomedical Ethics, Stanford University School of Medicine, Stanford, California, USA
| | - Eran Bendavid
- Department of Primary Care and Population Health, Stanford University School of Medicine, Stanford, California, USA
| | - Farirai Mutenherwa
- College of Health Sciences, University of KwaZulu-Natal, Durban, South Africa
- School of Applied Human Sciences, University of KwaZulu-Natal, Pietermaritzburg, South Africa
| | - Chirag Patel
- Department of Biomedical Informatics, Harvard Medical School, Boston, Massachusetts, USA
| | - Mildred K Cho
- Center for Biomedical Ethics, Stanford University School of Medicine, Stanford, California, USA
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22
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23
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Sheikh A, Anderson M, Albala S, Casadei B, Franklin BD, Richards M, Taylor D, Tibble H, Mossialos E. Health information technology and digital innovation for national learning health and care systems. Lancet Digit Health 2021; 3:e383-e396. [PMID: 33967002 DOI: 10.1016/s2589-7500(21)00005-4] [Citation(s) in RCA: 108] [Impact Index Per Article: 27.0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/24/2020] [Revised: 07/24/2020] [Accepted: 01/04/2021] [Indexed: 01/01/2023]
Abstract
Health information technology can support the development of national learning health and care systems, which can be defined as health and care systems that continuously use data-enabled infrastructure to support policy and planning, public health, and personalisation of care. The COVID-19 pandemic has offered an opportunity to assess how well equipped the UK is to leverage health information technology and apply the principles of a national learning health and care system in response to a major public health shock. With the experience acquired during the pandemic, each country within the UK should now re-evaluate their digital health and care strategies. After leaving the EU, UK countries now need to decide to what extent they wish to engage with European efforts to promote interoperability between electronic health records. Major priorities for strengthening health information technology in the UK include achieving the optimal balance between top-down and bottom-up implementation, improving usability and interoperability, developing capacity for handling, processing, and analysing data, addressing privacy and security concerns, and encouraging digital inclusivity. Current and future opportunities include integrating electronic health records across health and care providers, investing in health data science research, generating real-world data, developing artificial intelligence and robotics, and facilitating public-private partnerships. Many ethical challenges and unintended consequences of implementation of health information technology exist. To address these, there is a need to develop regulatory frameworks for the development, management, and procurement of artificial intelligence and health information technology systems, create public-private partnerships, and ethically and safely apply artificial intelligence in the National Health Service.
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Affiliation(s)
- Aziz Sheikh
- Usher Institute, College of Medicine and Veterinary Medicine, University of Edinburgh, Edinburgh, UK.
| | - Michael Anderson
- Department of Health Policy, London School of Economics and Political Science, London, UK
| | - Sarah Albala
- UCL Institute for Innovation and Public Purpose, University College London, London, UK
| | - Barbara Casadei
- Radcliffe Department of Medicine, BHF Centre for Research Excellence, NIHR Biomedical Research Centre, John Radcliffe Hospital, University of Oxford, Oxford, UK
| | - Bryony Dean Franklin
- UCL School of Pharmacy, University College London, London, UK; NIHR Imperial Patient Safety Translational Research Centre, Imperial College Healthcare NHS Trust, London, UK
| | - Mike Richards
- Department of Health Policy, London School of Economics and Political Science, London, UK; The Health Foundation, London, UK
| | - David Taylor
- UCL School of Pharmacy, University College London, London, UK
| | - Holly Tibble
- Usher Institute, College of Medicine and Veterinary Medicine, University of Edinburgh, Edinburgh, UK
| | - Elias Mossialos
- Department of Health Policy, London School of Economics and Political Science, London, UK; Institute of Global Health Innovation, Imperial College London, London, UK
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Ewuoso C. An African Relational Approach to Healthcare and Big Data Challenges. SCIENCE AND ENGINEERING ETHICS 2021; 27:34. [PMID: 34047844 PMCID: PMC8160550 DOI: 10.1007/s11948-021-00313-w] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 10/01/2020] [Accepted: 05/10/2021] [Indexed: 06/12/2023]
Abstract
Big Data has amplified some challenges in the healthcare context. One significant challenge is how to use healthcare big data (HBD) in ways that honor individual rights to informed consent or privacy. Careful analysis from diverse backgrounds will be vital in contributing ethical guidelines that can adequately address healthcare Big Data's growing complexities globally. Especially, the study argues that an under-explored African philosophy of Ubuntu can usefully influence big data practices in ways that address this challenge without undermining its benefits. Ubuntu emphasizes harmonious relationships. Harmonious relations entail identifying with one another and exhibiting solidarity to each other. One can identify or exhibit solidarity with others through psychological attitudes such as thinking of oneself as part of a "we" and acting in ways that will more likely improve the quality of life of others. The African relational philosophy of Ubuntu deserves to be given an audience not only for epistemic justice but also because the continued absence of African perspective in the discourse on ethical use of HBD science represents a missed opportunity to enrich ethical thinking about HBD from diverse backgrounds. Research is, however, required to provide greater specificity on how Ubuntu values may be integrated into HBD analytic techniques.
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Affiliation(s)
- Cornelius Ewuoso
- Department of Medicine, University of Cape Town, Cape Town, South Africa.
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25
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Liu S, Perdew M, Lithopoulos A, Rhodes RE. The Feasibility of Using Instagram Data to Predict Exercise Identity and Physical Activity Levels: Cross-sectional Observational Study. J Med Internet Res 2021; 23:e20954. [PMID: 33871380 PMCID: PMC8094017 DOI: 10.2196/20954] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/02/2020] [Revised: 08/31/2020] [Accepted: 03/18/2021] [Indexed: 11/13/2022] Open
Abstract
BACKGROUND Exercise identity is an important predictor for regular physical activity (PA). There is a lack of research on the potential mechanisms or antecedents of identity development. Theories of exercise identity have proposed that investment, commitment and self-referential (eg, I am an exerciser) statements, and social activation (comparison, support) may be crucial to identity development. Social media may be a potential mechanism to shape identity. OBJECTIVE The objectives of this study were to (1) explore whether participants were willing to share their Instagram data with researchers to predict their lifestyle behaviors; (2) examine whether PA-related Instagram uses (ie, the percentage of PA-related Instagram posts, fitness-related followings, and the number of likes received on PA-related posts) were positively associated with exercise identity; and (3) evaluate whether exercise identity mediates the relationship between PA-related Instagram use and weekly PA minutes. METHODS Participants (18-30 years old) were asked to complete a questionnaire to evaluate their current levels of exercise identity and PA. Participants' Instagram data for the past 12 months before the completion of the questionnaire were extracted and analyzed with their permission. Instagram posts related to PA in the 12 months before their assessment, the number of likes received for each PA-related post, and verified fitness- or PA-related followings by the participants were extracted and analyzed. Pearson correlation analyses were used to evaluate the relationship among exercise identity, PA, and Instagram uses. We conducted mediation analyses using the PROCESS macro modeling tool to examine whether exercise identity mediated the relationship between Instagram use variables and PA. Descriptive statistical analyses were used to compare the number of willing participants versus those who were not willing to share their Instagram data. RESULTS Of the 76 participants recruited to participate, 54% (n=41) shared their Instagram data. The percentage of PA-related Instagram posts (r=0.38; P=.01) and fitness-related Instagram followings (r=0.39; P=.01) were significantly associated with exercise identity. The average number of "likes" received (r=0.05, P=.75) was not significantly associated with exercise identity. Exercise identity significantly influenced the relationship between Instagram usage metrics (ie, the percentage of PA-related Instagram posts [P=.01] and verified fitness-related Instagram accounts [P=.01]) and PA level. Exercise identity did not significantly influence the relationship between the average number of "likes" received for the PA-related Instagram posts and PA level. CONCLUSIONS Our results suggest that an increase in PA-related Instagram posts and fitness-related followings were associated with a greater sense of exercise identity. Higher exercise identity led to higher PA levels. Exercise identity significantly influenced the relationship between PA-related Instagram posts (P=.01) and fitness-related followings on PA levels (P=.01). These results suggest that Instagram may influence a person's exercise identity and PA levels. Future intervention studies are warranted.
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Affiliation(s)
- Sam Liu
- School of Exercise Science, Physical and Health Education, University of Victoria, Victoria, BC, Canada
| | - Megan Perdew
- School of Exercise Science, Physical and Health Education, University of Victoria, Victoria, BC, Canada
| | - Alexander Lithopoulos
- School of Exercise Science, Physical and Health Education, University of Victoria, Victoria, BC, Canada
| | - Ryan E Rhodes
- School of Exercise Science, Physical and Health Education, University of Victoria, Victoria, BC, Canada
- Department of Psychology, University of Victoria, Victoria, BC, Canada
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Dórea FC, Revie CW. Data-Driven Surveillance: Effective Collection, Integration, and Interpretation of Data to Support Decision Making. Front Vet Sci 2021; 8:633977. [PMID: 33778039 PMCID: PMC7994248 DOI: 10.3389/fvets.2021.633977] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/26/2020] [Accepted: 02/18/2021] [Indexed: 11/20/2022] Open
Abstract
The biggest change brought about by the “era of big data” to health in general, and epidemiology in particular, relates arguably not to the volume of data encountered, but to its variety. An increasing number of new data sources, including many not originally collected for health purposes, are now being used for epidemiological inference and contextualization. Combining evidence from multiple data sources presents significant challenges, but discussions around this subject often confuse issues of data access and privacy, with the actual technical challenges of data integration and interoperability. We review some of the opportunities for connecting data, generating information, and supporting decision-making across the increasingly complex “variety” dimension of data in population health, to enable data-driven surveillance to go beyond simple signal detection and support an expanded set of surveillance goals.
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Affiliation(s)
- Fernanda C Dórea
- Department of Disease Control and Epidemiology, National Veterinary Institute, Uppsala, Sweden
| | - Crawford W Revie
- Computer and Information Sciences, University of Strathclyde, Glasgow, United Kingdom
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27
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Georgieva I, Beaunoyer E, Guitton MJ. Ensuring social acceptability of technological tracking in the COVID-19 context. COMPUTERS IN HUMAN BEHAVIOR 2021. [DOI: 10.1016/j.chb.2020.106639] [Citation(s) in RCA: 4] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/16/2023]
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28
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McKeown A, Mourby M, Harrison P, Walker S, Sheehan M, Singh I. Ethical Issues in Consent for the Reuse of Data in Health Data Platforms. SCIENCE AND ENGINEERING ETHICS 2021; 27:9. [PMID: 33538942 PMCID: PMC7862505 DOI: 10.1007/s11948-021-00282-0] [Citation(s) in RCA: 4] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Received: 02/14/2020] [Accepted: 12/21/2020] [Indexed: 05/08/2023]
Abstract
Data platforms represent a new paradigm for carrying out health research. In the platform model, datasets are pooled for remote access and analysis, so novel insights for developing better stratified and/or personalised medicine approaches can be derived from their integration. If the integration of diverse datasets enables development of more accurate risk indicators, prognostic factors, or better treatments and interventions, this obviates the need for the sharing and reuse of data; and a platform-based approach is an appropriate model for facilitating this. Platform-based approaches thus require new thinking about consent. Here we defend an approach to meeting this challenge within the data platform model, grounded in: the notion of 'reasonable expectations' for the reuse of data; Waldron's account of 'integrity' as a heuristic for managing disagreement about the ethical permissibility of the approach; and the element of the social contract that emphasises the importance of public engagement in embedding new norms of research consistent with changing technological realities. While a social contract approach may sound appealing, however, it is incoherent in the context at hand. We defend a way forward guided by that part of the social contract which requires public approval for the proposal and argue that we have moral reasons to endorse a wider presumption of data reuse. However, we show that the relationship in question is not recognisably contractual and that the social contract approach is therefore misleading in this context. We conclude stating four requirements on which the legitimacy of our proposal rests.
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Affiliation(s)
- Alex McKeown
- Department of Psychiatry, Wellcome Centre for Ethics and Humanities, Warneford Hospital, University of Oxford, Oxford, OX3 7JX, UK.
| | - Miranda Mourby
- Centre for Health, Law and Emerging Technologies (HeLEX), University of Oxford, Oxford, UK
| | - Paul Harrison
- Department of Psyhiatry, Oxford Health NHS Foundation Trust, University of Oxford, Oxford, UK
| | - Sophie Walker
- Department of Psychiatry, University of Oxford, Oxford, UK
| | - Mark Sheehan
- Ethox, Wellcome Centre for Ethics and Humanities, University of Oxford, Oxford, UK
| | - Ilina Singh
- Department of Psychiatry, Wellcome Centre for Ethics and Humanities, University of Oxford, Oxford, UK
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Nittas V, Puhan MA, von Wyl V. Toward a Working Definition of eCohort Studies in Health Research: Narrative Literature Review. JMIR Public Health Surveill 2021; 7:e24588. [PMID: 33475521 PMCID: PMC7861999 DOI: 10.2196/24588] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/28/2020] [Revised: 11/06/2020] [Accepted: 12/09/2020] [Indexed: 01/01/2023] Open
Abstract
Background The wide availability of internet-connected devices and new sensor technologies increasingly infuse longitudinal observational study designs and cohort studies. Simultaneously, the costly and time-consuming nature of traditional cohorts has given rise to alternative, technology-driven designs such as eCohorts, which remain inadequately described in the scientific literature. Objective The aim of this study was to outline and discuss what may constitute an eCohort, as well as to formulate a first working definition for health researchers based on a review of the relevant literature. Methods A two-staged review and synthesis process was performed comparing 10 traditional cohorts and 10 eCohorts across the six core steps in the life cycle of cohort designs. Results eCohorts are a novel type of technology-driven cohort study that are not physically linked to a clinical setting, follow more relaxed and not necessarily random sampling procedures, are primarily based on self-reported and digitally collected data, and systematically aim to leverage the internet and digitalization to achieve flexibility, interactivity, patient-centeredness, and scalability. This approach comes with some hurdles such as data quality, generalizability, and privacy concerns. Conclusions eCohorts have similarities to their traditional counterparts; however, they are sufficiently distinct to be treated as a separate type of cohort design. The novelty of eCohorts is associated with a range of strengths and weaknesses that require further exploration.
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Affiliation(s)
- Vasileios Nittas
- Epidemiology, Biostatistics and Prevention Institute, University of Zurich, Zurich, Switzerland
| | - Milo Alan Puhan
- Epidemiology, Biostatistics and Prevention Institute, University of Zurich, Zurich, Switzerland
| | - Viktor von Wyl
- Epidemiology, Biostatistics and Prevention Institute, University of Zurich, Zurich, Switzerland
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Degeling C, Chen G, Gilbert GL, Brookes V, Thai T, Wilson A, Johnson J. Changes in public preferences for technologically enhanced surveillance following the COVID-19 pandemic: a discrete choice experiment. BMJ Open 2020; 10:e041592. [PMID: 33208337 PMCID: PMC7677347 DOI: 10.1136/bmjopen-2020-041592] [Citation(s) in RCA: 11] [Impact Index Per Article: 2.2] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/12/2020] [Revised: 10/18/2020] [Accepted: 10/29/2020] [Indexed: 01/06/2023] Open
Abstract
OBJECTIVES As governments attempt to navigate a path out of COVID-19 restrictions, robust evidence is essential to inform requirements for public acceptance of technologically enhanced communicable disease surveillance systems. We examined the value of core surveillance system attributes to the Australian public, before and during the early stages of the current pandemic. DESIGN A discrete choice experiment was conducted in Australia with a representative group of respondents, before and after the WHO declared COVID-19 a Public Health Emergency of International Concern. We identified and investigated the relative importance of seven attributes associated with technologically enhanced disease surveillance: respect for personal autonomy; privacy/confidentiality; data certainty/confidence; data security; infectious disease mortality prevention; infectious disease morbidity prevention; and attribution of (causal) responsibility. Specifically, we explored how the onset of the COVID-19 outbreak influenced participant responses. SETTING AND PARTICIPANTS 2008 Australians (general public) completed the experiment: 793 before COVID-19 outbreak onset (mean age 45.9 years, 50.2% male) and 1215 after onset (mean age 47.2 years, 49% male). RESULTS All seven attributes significantly influenced respondents' preferences for communicable disease surveillance systems. After onset, participants demonstrated greater preference for a surveillance system that could prevent a higher number of illnesses and deaths, and were less concerned about their personal autonomy. However, they also increased their preference for a system with high data security. CONCLUSIONS Public acceptance of technology-based communicable disease surveillance is situation dependent. During an epidemic, there is likely to be greater tolerance of technologically enhanced disease surveillance systems that result in restrictions on personal activity if such systems can prevent high morbidity and mortality. However, this acceptance of lower personal autonomy comes with an increased requirement to ensure data security. These findings merit further research as the pandemic unfolds and strategies are put in place that enable individuals and societies to live with SARS-CoV-2 endemicity.
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Affiliation(s)
- Chris Degeling
- Australian Centre for Health Engagement, Evidence and Values, University of Wollongong, Wollongong, New South Wales, Australia
| | - Gang Chen
- Centre for Health Economics, Monash Business School, Monash University, Caufield East, Victoria, Australia
| | - Gwendolyn L Gilbert
- Sydney Health Ethics, Sydney School of Public Health, The University of Sydney Faculty of Medicine and Health, Sydney, New South Wales, Australia
- Marie Bashir Institute for Emerging Infectious Disease and Biosecurity, The University of Sydney, Sydney, New South Wales, Australia
| | - Victoria Brookes
- School of Animal and Veterinary Sciences, Charles Sturt University, Wagga Wagga, New South Wales, Australia
| | - Thi Thai
- Centre for Health Economics, Monash Business School, Monash University, Caufield East, Victoria, Australia
| | - Andrew Wilson
- Menzies Centre for Health Policy, The University of Sydney, Sydney, New South Wales, Australia
| | - Jane Johnson
- Marie Bashir Institute for Emerging Infectious Disease and Biosecurity, The University of Sydney, Sydney, New South Wales, Australia
- Department of Philosophy, Macquarie University, Sydney, New South Wales, Australia
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Jalali N, Sahu KS, Oetomo A, Morita PP. Understanding User Behavior Through the Use of Unsupervised Anomaly Detection: Proof of Concept Using Internet of Things Smart Home Thermostat Data for Improving Public Health Surveillance. JMIR Mhealth Uhealth 2020; 8:e21209. [PMID: 33185562 PMCID: PMC7695536 DOI: 10.2196/21209] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.4] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/08/2020] [Revised: 07/27/2020] [Accepted: 10/24/2020] [Indexed: 01/23/2023] Open
Abstract
BACKGROUND One of the main concerns of public health surveillance is to preserve the physical and mental health of older adults while supporting their independence and privacy. On the other hand, to better assist those individuals with essential health care services in the event of an emergency, their regular activities should be monitored. Internet of Things (IoT) sensors may be employed to track the sequence of activities of individuals via ambient sensors, providing real-time insights on daily activity patterns and easy access to the data through the connected ecosystem. Previous surveys to identify the regular activity patterns of older adults were deficient in the limited number of participants, short period of activity tracking, and high reliance on predefined normal activity. OBJECTIVE The objective of this study was to overcome the aforementioned challenges by performing a pilot study to evaluate the utilization of large-scale data from smart home thermostats that collect the motion status of individuals for every 5-minute interval over a long period of time. METHODS From a large-scale dataset, we selected a group of 30 households who met the inclusion criteria (having at least 8 sensors, being connected to the system for at least 355 days in 2018, and having up to 4 occupants). The indoor activity patterns were captured through motion sensors. We used the unsupervised, time-based, deep neural-network architecture long short-term memory-variational autoencoder to identify the regular activity pattern for each household on 2 time scales: annual and weekday. The results were validated using 2019 records. The area under the curve as well as loss in 2018 were compatible with the 2019 schedule. Daily abnormal behaviors were identified based on deviation from the regular activity model. RESULTS The utilization of this approach not only enabled us to identify the regular activity pattern for each household but also provided other insights by assessing sleep behavior using the sleep time and wake-up time. We could also compare the average time individuals spent at home for the different days of the week. From our study sample, there was a significant difference in the time individuals spent indoors during the weekend versus on weekdays. CONCLUSIONS This approach could enhance individual health monitoring as well as public health surveillance. It provides a potentially nonobtrusive tool to assist public health officials and governments in policy development and emergency personnel in the event of an emergency by measuring indoor behavior while preserving privacy and using existing commercially available thermostat equipment.
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Affiliation(s)
- Niloofar Jalali
- School of Public Health and Health Systems, Faculty of Applied Health Sciences, University of Waterloo, Waterloo, ON, Canada
| | - Kirti Sundar Sahu
- School of Public Health and Health Systems, Faculty of Applied Health Sciences, University of Waterloo, Waterloo, ON, Canada
| | - Arlene Oetomo
- School of Public Health and Health Systems, Faculty of Applied Health Sciences, University of Waterloo, Waterloo, ON, Canada
| | - Plinio Pelegrini Morita
- School of Public Health and Health Systems, Faculty of Applied Health Sciences, University of Waterloo, Waterloo, ON, Canada
- Institute of Health Policy, Management, and Evaluation, University of Toronto, Toronto, ON, Canada
- Department of Systems Design Engineering, University of Waterloo, Waterloo, ON, Canada
- eHealth Innovation, Techna Institute, University Health Network, Toronto, ON, Canada
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Favaretto M, De Clercq E, Gaab J, Elger BS. First do no harm: An exploration of researchers' ethics of conduct in Big Data behavioral studies. PLoS One 2020; 15:e0241865. [PMID: 33152039 PMCID: PMC7644008 DOI: 10.1371/journal.pone.0241865] [Citation(s) in RCA: 5] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/22/2020] [Accepted: 10/21/2020] [Indexed: 11/24/2022] Open
Abstract
Research ethics has traditionally been guided by well-established documents such as the Belmont Report and the Declaration of Helsinki. At the same time, the introduction of Big Data methods, that is having a great impact in behavioral research, is raising complex ethical issues that make protection of research participants an increasingly difficult challenge. By conducting 39 semi-structured interviews with academic scholars in both Switzerland and United States, our research aims at exploring the code of ethics and research practices of academic scholars involved in Big Data studies in the fields of psychology and sociology to understand if the principles set by the Belmont Report are still considered relevant in Big Data research. Our study shows how scholars generally find traditional principles to be a suitable guide to perform ethical data research but, at the same time, they recognized and elaborated on the challenges embedded in their practical application. In addition, due to the growing introduction of new actors in scholarly research, such as data holders and owners, it was also questioned whether responsibility to protect research participants should fall solely on investigators. In order to appropriately address ethics issues in Big Data research projects, education in ethics, exchange and dialogue between research teams and scholars from different disciplines should be enhanced. In addition, models of consultancy and shared responsibility between investigators, data owners and review boards should be implemented in order to ensure better protection of research participants.
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Affiliation(s)
| | - Eva De Clercq
- Institute for Biomedical Ethics, University of Basel, Basel, Switzerland
| | - Jens Gaab
- Division of Clinical Psychology and Psychotherapy, Faculty of Psychology, University of Basel, Basel, Switzerland
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Howe Iii EG, Elenberg F. Ethical Challenges Posed by Big Data. INNOVATIONS IN CLINICAL NEUROSCIENCE 2020; 17:24-30. [PMID: 33898098 PMCID: PMC7819582] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Subscribe] [Scholar Register] [Indexed: 06/12/2023]
Abstract
Big Data is a term that refers to tremendously large data sets intended for computational analysis that can be used to advance research through revealing trends and associations. Innovative research that leverages Big Data can dramatically advance the fields of medicine and public health but can also raise new ethical challenges. This paper explores these challenges, and how they might be addressed such that individuals are optimally protected. Key ethical concerns raised by Big Data research include respecting patient's autonomy via provision of adequate consent, ensuring equity, and respecting participants' privacy. Examples of actions that could be taken to address these key concerns on a broader regulatory level, as well as on a case specific level, are presented. Big Data research offers enormous potential, but due to its widespread influence, it also introduces the potential for extensive harm. It is imperative to consider and account for the risks associated with this research.
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Affiliation(s)
- Edmund G Howe Iii
- Dr. Howe is a Professor of Psychiatry and Medicine, Director of Medical School Programs in Ethics, and Senior Scientist at Uniformed Services University of the Health Sciences in Bethesda, Maryland
| | - Falicia Elenberg
- Dr. Howe is a Professor of Psychiatry and Medicine, Director of Medical School Programs in Ethics, and Senior Scientist at Uniformed Services University of the Health Sciences in Bethesda, Maryland
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Changing the Nature of Quantitative Biology Education: Data Science as a Driver. Bull Math Biol 2020; 82:127. [DOI: 10.1007/s11538-020-00785-0] [Citation(s) in RCA: 6] [Impact Index Per Article: 1.2] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/24/2020] [Accepted: 07/28/2020] [Indexed: 12/12/2022]
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Mirchev M, Mircheva I, Kerekovska A. The Academic Viewpoint on Patient Data Ownership in the Context of Big Data: Scoping Review. J Med Internet Res 2020; 22:e22214. [PMID: 32808934 PMCID: PMC7463395 DOI: 10.2196/22214] [Citation(s) in RCA: 14] [Impact Index Per Article: 2.8] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/06/2020] [Revised: 07/24/2020] [Accepted: 07/26/2020] [Indexed: 12/15/2022] Open
Abstract
BACKGROUND The ownership of patient information in the context of big data is a relatively new problem, which is not yet fully recognized by the medical academic community. The problem is interdisciplinary, incorporating legal, ethical, medical, and aspects of information and communication technologies, requiring a sophisticated analysis. However, no previous scoping review has mapped existing studies on the subject. OBJECTIVE This study aims to map and assess published studies on patient data ownership in the context of big data as viewed by the academic community. METHODS A scoping review was conducted based on the 5-stage framework outlined by Arksey and O'Malley and further developed by Levac, Colquhoun, and O'Brien. The organization and reporting of results of the scoping review were conducted according to PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses and its extensions for Scoping Reviews). A systematic and comprehensive search of 4 scientific information databases, PubMed, ScienceDirect, Scopus, and Springer, was performed for studies published between January 2000 and October 2019. Two authors independently assessed the eligibility of the studies and the extracted data. RESULTS The review included 32 eligible articles authored by academicians that correspond to 3 focus areas: problem (ownership), area (health care), and context (big data). Five major aspects were studied: the scientific area of publications, aspects and academicians' perception of ownership in the context of big data, proposed solutions, and practical applications for data ownership issues in the context of big data. The aspects in which publications consider ownership of medical data are not clearly distinguished but can be summarized as ethical, legal, political, and managerial. The ownership of patient data is perceived primarily as a challenge fundamental to conducting medical research, including data sales and sharing, and to a lesser degree as a means of control, problem, threat, and opportunity also in view of medical research. Although numerous solutions falling into 3 categories, technology, law, and policy, were proposed, only 3 real applications were discussed. CONCLUSIONS The issue of ownership of patient information in the context of big data is poorly researched; it is not addressed consistently and in its integrity, and there is no consensus on policy decisions and the necessary legal regulations. Future research should investigate the issue of ownership as a core research question and not as a minor fragment among other topics. More research is needed to increase the body of knowledge regarding the development of adequate policies and relevant legal frameworks in compliance with ethical standards. The combined efforts of multidisciplinary academic teams are needed to overcome existing gaps in the perception of ownership, the aspects of ownership, and the possible solutions to patient data ownership issues in the reality of big data.
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Affiliation(s)
- Martin Mirchev
- Department of Social Medicine and Healthcare Organization, Faculty of Public Health, Medical University of Varna, Varna, Bulgaria
| | - Iskra Mircheva
- Department of Social Medicine and Healthcare Organization, Faculty of Public Health, Medical University of Varna, Varna, Bulgaria
| | - Albena Kerekovska
- Department of Social Medicine and Healthcare Organization, Faculty of Public Health, Medical University of Varna, Varna, Bulgaria
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Woldaregay AZ, Launonen IK, Årsand E, Albers D, Holubová A, Hartvigsen G. Toward Detecting Infection Incidence in People With Type 1 Diabetes Using Self-Recorded Data (Part 1): A Novel Framework for a Personalized Digital Infectious Disease Detection System. J Med Internet Res 2020; 22:e18911. [PMID: 32784178 PMCID: PMC7450374 DOI: 10.2196/18911] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/26/2020] [Revised: 06/06/2020] [Accepted: 06/11/2020] [Indexed: 01/23/2023] Open
Abstract
BACKGROUND Type 1 diabetes is a chronic condition of blood glucose metabolic disorder caused by a lack of insulin secretion from pancreas cells. In people with type 1 diabetes, hyperglycemia often occurs upon infection incidences. Despite the fact that patients increasingly gather data about themselves, there are no solid findings that uncover the effect of infection incidences on key parameters of blood glucose dynamics to support the effort toward developing a digital infectious disease detection system. OBJECTIVE The study aims to retrospectively analyze the effect of infection incidence and pinpoint optimal parameters that can effectively be used as input variables for developing an infection detection algorithm and to provide a general framework regarding how a digital infectious disease detection system can be designed and developed using self-recorded data from people with type 1 diabetes as a secondary source of information. METHODS We retrospectively analyzed high precision self-recorded data of 10 patient-years captured within the longitudinal records of three people with type 1 diabetes. Obtaining such a rich and large data set from a large number of participants is extremely expensive and difficult to acquire, if not impossible. The data set incorporates blood glucose, insulin, carbohydrate, and self-reported events of infections. We investigated the temporal evolution and probability distribution of the key blood glucose parameters within a specified timeframe (weekly, daily, and hourly). RESULTS Our analysis demonstrated that upon infection incidence, there is a dramatic shift in the operating point of the individual blood glucose dynamics in all the timeframes (weekly, daily, and hourly), which clearly violates the usual norm of blood glucose dynamics. During regular or normal situations, higher insulin and reduced carbohydrate intake usually results in lower blood glucose levels. However, in all infection cases as opposed to the regular or normal days, blood glucose levels were elevated for a prolonged period despite higher insulin and reduced carbohydrates intake. For instance, compared with the preinfection and postinfection weeks, on average, blood glucose levels were elevated by 6.1% and 16%, insulin (bolus) was increased by 42% and 39.3%, and carbohydrate consumption was reduced by 19% and 28.1%, respectively. CONCLUSIONS We presented the effect of infection incidence on key parameters of blood glucose dynamics along with the necessary framework to exploit the information for realizing a digital infectious disease detection system. The results demonstrated that compared with regular or normal days, infection incidence substantially alters the norm of blood glucose dynamics, which are quite significant changes that could possibly be detected through personalized modeling, for example, prediction models and anomaly detection algorithms. Generally, we foresee that these findings can benefit the efforts toward building next generation digital infectious disease detection systems and provoke further thoughts in this challenging field.
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Affiliation(s)
| | | | - Eirik Årsand
- Department of Computer Science, University of Tromsø - The Arctic University of Norway, Tromsø, Norway
| | - David Albers
- Department of Pediatrics, Informatics and Data Science, University of Colorado, Aurora, CO, United States
- Department of Biomedical Informatics, Columbia University, New York, NY, United States
| | - Anna Holubová
- Department of ICT in Medicine, Faculty of Biomedical Engineering, Czech Technical University, Prague, Czech Republic
- Spin-off Company and Research Results Commercialization Center of the First Faculty of Medicine, Charles University, Prague, Czech Republic
| | - Gunnar Hartvigsen
- Department of Computer Science, University of Tromsø - The Arctic University of Norway, Tromsø, Norway
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Morley J, Machado CCV, Burr C, Cowls J, Joshi I, Taddeo M, Floridi L. The ethics of AI in health care: A mapping review. Soc Sci Med 2020; 260:113172. [PMID: 32702587 DOI: 10.1016/j.socscimed.2020.113172] [Citation(s) in RCA: 207] [Impact Index Per Article: 41.4] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Revised: 06/22/2020] [Accepted: 06/23/2020] [Indexed: 02/06/2023]
Abstract
This article presents a mapping review of the literature concerning the ethics of artificial intelligence (AI) in health care. The goal of this review is to summarise current debates and identify open questions for future research. Five literature databases were searched to support the following research question: how can the primary ethical risks presented by AI-health be categorised, and what issues must policymakers, regulators and developers consider in order to be 'ethically mindful? A series of screening stages were carried out-for example, removing articles that focused on digital health in general (e.g. data sharing, data access, data privacy, surveillance/nudging, consent, ownership of health data, evidence of efficacy)-yielding a total of 156 papers that were included in the review. We find that ethical issues can be (a) epistemic, related to misguided, inconclusive or inscrutable evidence; (b) normative, related to unfair outcomes and transformative effectives; or (c) related to traceability. We further find that these ethical issues arise at six levels of abstraction: individual, interpersonal, group, institutional, and societal or sectoral. Finally, we outline a number of considerations for policymakers and regulators, mapping these to existing literature, and categorising each as epistemic, normative or traceability-related and at the relevant level of abstraction. Our goal is to inform policymakers, regulators and developers of what they must consider if they are to enable health and care systems to capitalise on the dual advantage of ethical AI; maximising the opportunities to cut costs, improve care, and improve the efficiency of health and care systems, whilst proactively avoiding the potential harms. We argue that if action is not swiftly taken in this regard, a new 'AI winter' could occur due to chilling effects related to a loss of public trust in the benefits of AI for health care.
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Affiliation(s)
- Jessica Morley
- Oxford Internet Institute, University of Oxford, 1 St Giles, Oxford, OX1 3JS, UK.
| | - Caio C V Machado
- Oxford Internet Institute, University of Oxford, 1 St Giles, Oxford, OX1 3JS, UK
| | - Christopher Burr
- Oxford Internet Institute, University of Oxford, 1 St Giles, Oxford, OX1 3JS, UK
| | - Josh Cowls
- Oxford Internet Institute, University of Oxford, 1 St Giles, Oxford, OX1 3JS, UK; Alan Turing Institute, British Library, 96 Euston Rd, London, NW1 2DB, UK
| | - Indra Joshi
- NHSX, Skipton House, 80 London Road, SE1 6LH, UK
| | - Mariarosaria Taddeo
- Oxford Internet Institute, University of Oxford, 1 St Giles, Oxford, OX1 3JS, UK; Alan Turing Institute, British Library, 96 Euston Rd, London, NW1 2DB, UK; Department of Computer Science, University of Oxford, 15 Parks Rd, Oxford, OX1 3QD, UK
| | - Luciano Floridi
- Oxford Internet Institute, University of Oxford, 1 St Giles, Oxford, OX1 3JS, UK; Alan Turing Institute, British Library, 96 Euston Rd, London, NW1 2DB, UK; Department of Computer Science, University of Oxford, 15 Parks Rd, Oxford, OX1 3QD, UK
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Favaretto M, De Clercq E, Briel M, Elger BS. Working Through Ethics Review of Big Data Research Projects: An Investigation into the Experiences of Swiss and American Researchers. J Empir Res Hum Res Ethics 2020; 15:339-354. [PMID: 32552544 DOI: 10.1177/1556264620935223] [Citation(s) in RCA: 4] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/15/2022]
Abstract
The employment of Big Data as an increasingly used research method has introduced novel challenges to ethical research practices and to ethics committees (ECs) globally. The aim of this study is to explore the experiences of scholars with ECs in the ethical evaluation of Big Data projects. Thirty-five interviews were performed with Swiss and American researchers involved in Big Data research in psychology and sociology. The interviews were analyzed using thematic coding. Our respondents reported lack of support from ECs, absence of appropriate expertise among members of the boards, and lack of harmonized evaluation criteria between committees. To implement ECs practices we argue for updating the expertise of board members and the institution of a consultancy model between researchers and ECs.
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Affiliation(s)
| | - Eva De Clercq
- Institute for Biomedical Ethics, University of Basel, Basel, Switzerland
| | - Matthias Briel
- Basel Institute for Clinical Epidemiology and Biostatistics, University Hospital Basel, Basel, Switzerland
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A call for an ethical framework when using social media data for artificial intelligence applications in public health research. ACTA ACUST UNITED AC 2020; 46:169-173. [PMID: 32673381 DOI: 10.14745/ccdr.v46i06a03] [Citation(s) in RCA: 4] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/08/2022]
Abstract
Advancements in artificial intelligence (AI), more precisely the subfield of machine learning, and their applications to open-source internet data, such as social media, are growing faster than the management of ethical issues for use in society. An ethical framework helps scientists and policy makers consider ethics in their fields of practice, legitimize their work and protect members of the data-generating public. A central question for advancing the ethical framework is whether or not Tweets, Facebook posts and other open-source social media data generated by the public represent a human or not. The objective of this paper is to highlight ethical issues that the public health sector will be or is already confronting when using social media data in practice. The issues include informed consent, privacy, anonymization and balancing these issues with the benefits of using social media data for the common good. Current ethical frameworks need to provide guidance for addressing issues arising from the use of social media data in the public health sector. Discussions in this area should occur while the application of open-source data is still relatively new, and they should also keep pace as other problems arise from ongoing technological change.
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Arnaboldi M, Azzone G. Data science in the design of public policies: dispelling the obscurity in matching policy demand and data offer. Heliyon 2020; 6:e04300. [PMID: 32637693 PMCID: PMC7327742 DOI: 10.1016/j.heliyon.2020.e04300] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/20/2020] [Revised: 05/28/2020] [Accepted: 06/21/2020] [Indexed: 11/25/2022] Open
Abstract
Data Science (DS) is expected to deliver value for public governance. In a number of studies, strong claims have been made about the potential of big data and data analytics and there are now several cases showing their application in areas such as service delivery and organizational administration. The role of DS in policy-making has, on the contrary, still been explored only marginally, but it is clear that there is the need for greater investigation because of its greater complexity and its distinctive inter-organizational boundaries. In this paper, we have investigated how DS can contribute to the policy definition process, endorsing a socio-technical perspective. This exploration has addressed the technical elements of DS - data and processes - as well as the social aspects surrounding the actors' interaction within the definition process. Three action research cases are presented in the paper, lifting the veil of obscurity from how DS can support policy-making in practice. The findings highlight the importance of a new role, here defined as that of a translator, who can provide clarity and understanding of policy needs, assess whether data-driven results fit the legislative setting to be addressed, and become the junction point between data scientists and policy-makers. The three cases and their different achievements make it possible to draw attention to the enabling and inhibiting factors in the application of DS.
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Affiliation(s)
- Michela Arnaboldi
- Department of Management, Economics and Industrial Engineering, Politecnico di Milano, Italy
| | - Giovanni Azzone
- Department of Management, Economics and Industrial Engineering, Politecnico di Milano, Italy
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41
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McLennan S, Celi LA, Buyx A. COVID-19: Putting the General Data Protection Regulation to the Test. JMIR Public Health Surveill 2020; 6:e19279. [PMID: 32449686 PMCID: PMC7265798 DOI: 10.2196/19279] [Citation(s) in RCA: 15] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/11/2020] [Revised: 05/22/2020] [Accepted: 05/22/2020] [Indexed: 12/20/2022] Open
Abstract
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.
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Affiliation(s)
- Stuart McLennan
- Institute of History and Ethics in Medicine, Technical University of Munich, Munich, Germany
| | - Leo Anthony Celi
- Division of Pulmonary, Critical Care, and Sleep Medicine, Beth Israel Deaconess Medical Center, Boston, MA, United States.,Harvard-Massachusetts Division of Health Science and Technology, Cambridge, MA, United States
| | - Alena Buyx
- Institute of History and Ethics in Medicine, Technical University of Munich, Munich, Germany
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42
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Affiliation(s)
- Michelle M Mello
- Center for Health Policy/Primary Care and Outcomes Research, Department of Medicine, Stanford University School of Medicine, Stanford, CA, USA. .,Stanford Law School, Stanford, CA, USA
| | - C Jason Wang
- Center for Health Policy/Primary Care and Outcomes Research, Department of Medicine, Stanford University School of Medicine, Stanford, CA, USA.,Department of Pediatrics and Center for Policy, Outcomes and Prevention, Stanford University School of Medicine, Stanford, CA, USA
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43
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Degeling C, Carter SM, van Oijen AM, McAnulty J, Sintchenko V, Braunack-Mayer A, Yarwood T, Johnson J, Gilbert GL. Community perspectives on the benefits and risks of technologically enhanced communicable disease surveillance systems: a report on four community juries. BMC Med Ethics 2020; 21:31. [PMID: 32334597 PMCID: PMC7183724 DOI: 10.1186/s12910-020-00474-6] [Citation(s) in RCA: 10] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/02/2020] [Accepted: 04/17/2020] [Indexed: 12/18/2022] Open
Abstract
Background Outbreaks of infectious disease cause serious and costly health and social problems. Two new technologies – pathogen whole genome sequencing (WGS) and Big Data analytics – promise to improve our capacity to detect and control outbreaks earlier, saving lives and resources. However, routinely using these technologies to capture more detailed and specific personal information could be perceived as intrusive and a threat to privacy. Method Four community juries were convened in two demographically different Sydney municipalities and two regional cities in New South Wales, Australia (western Sydney, Wollongong, Tamworth, eastern Sydney) to elicit the views of well-informed community members on the acceptability and legitimacy of:
making pathogen WGS and linked administrative data available for public health research using this information in concert with data linkage and machine learning to enhance communicable disease surveillance systems Fifty participants of diverse backgrounds, mixed genders and ages were recruited by random-digit-dialling and topic-blinded social-media advertising. Each jury was presented with balanced factual evidence supporting different expert perspectives on the potential benefits and costs of technologically enhanced public health research and communicable disease surveillance and given the opportunity to question experts. Results Almost all jurors supported data linkage and WGS on routinely collected patient isolates for the purposes of public health research, provided standard de-identification practices were applied. However, allowing this information to be operationalised as a syndromic surveillance system was highly contentious with three juries voting in favour, and one against by narrow margins. For those in favour, support depended on several conditions related to system oversight and security being met. Those against were concerned about loss of privacy and did not trust Australian governments to run secure and effective systems. Conclusions Participants across all four events strongly supported the introduction of data linkage and pathogenomics to public health research under current research governance structures. Combining pathogen WGS with event-based data surveillance systems, however, is likely to be controversial because of a lack of public trust, even when the potential public health benefits are clear. Any suggestion of private sector involvement or commercialisation of WGS or surveillance data was unanimously rejected.
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Affiliation(s)
- Chris Degeling
- Australian Centre for Health Engagement, Evidence and Values, University of Wollongong, Wollongong, Australia. .,School of Health and Society, University of Wollongong, Wollongong, Australia.
| | - Stacy M Carter
- Australian Centre for Health Engagement, Evidence and Values, University of Wollongong, Wollongong, Australia.,School of Health and Society, University of Wollongong, Wollongong, Australia
| | - Antoine M van Oijen
- Molecular Horizons and the Illawarra Health and Medical Research Institute, University of Wollongong, Wollongong, Australia
| | | | - Vitali Sintchenko
- The Centre for Infectious Diseases and Microbiology - Public Health, Westmead, Sydney, Australia.,Marie Bashir Institute for Infectious Disease and Biosecurity, The University of Sydney, Sydney, Australia
| | - Annette Braunack-Mayer
- Australian Centre for Health Engagement, Evidence and Values, University of Wollongong, Wollongong, Australia.,School of Health and Society, University of Wollongong, Wollongong, Australia
| | - Trent Yarwood
- Cairns and Hinterland Hospital and Health Service, Cairns, Australia.,Cairns Clinical School, James Cook University, Cairns, Australia.,Rural Clinical School, University of Queensland, Brisbane, Australia
| | - Jane Johnson
- The Centre for Infectious Diseases and Microbiology - Public Health, Westmead, Sydney, Australia.,Sydney Health Ethics, School of Public Health, The University of Sydney, Sydney, Australia
| | - Gwendolyn L Gilbert
- The Centre for Infectious Diseases and Microbiology - Public Health, Westmead, Sydney, Australia.,Marie Bashir Institute for Infectious Disease and Biosecurity, The University of Sydney, Sydney, Australia.,Sydney Health Ethics, School of Public Health, The University of Sydney, Sydney, Australia
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44
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Rennie S, Buchbinder M, Juengst E, Brinkley-Rubinstein L, Blue C, Rosen DL. Scraping the Web for Public Health Gains: Ethical Considerations from a 'Big Data' Research Project on HIV and Incarceration. Public Health Ethics 2020; 13:111-121. [PMID: 32765647 DOI: 10.1093/phe/phaa006] [Citation(s) in RCA: 13] [Impact Index Per Article: 2.6] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/26/2022] Open
Abstract
Web scraping involves using computer programs for automated extraction and organization of data from the Web for the purpose of further data analysis and use. It is frequently used by commercial companies, but also has become a valuable tool in epidemiological research and public health planning. In this paper, we explore ethical issues in a project that "scrapes" public websites of U.S. county jails as part of an effort to develop a comprehensive database (including individual-level jail incarcerations, court records and confidential HIV records) to enhance HIV surveillance and improve continuity of care for incarcerated populations. We argue that the well-known framework of Emanuel et al. (2000) provides only partial ethical guidance for the activities we describe, which lie at a complex intersection of public health research and public health practice. We suggest some ethical considerations from the ethics of public health practice to help fill gaps in this relatively unexplored area.
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Affiliation(s)
- Stuart Rennie
- UNC Bioethics Center, Department of Social Medicine, University of North Carolina at Chapel Hill
| | - Mara Buchbinder
- UNC Bioethics Center, Department of Social Medicine, University of North Carolina at Chapel Hill
| | - Eric Juengst
- UNC Bioethics Center, Department of Social Medicine, University of North Carolina at Chapel Hill
| | | | - Colleen Blue
- Institute for Global Health and Infectious Diseases, University of North Carolina at Chapel Hill
| | - David L Rosen
- Institute for Global Health and Infectious Diseases, University of North Carolina at Chapel Hill
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45
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Kim ES, James P, Zevon ES, Trudel-Fitzgerald C, Kubzansky LD, Grodstein F. Social Media as an Emerging Data Resource for Epidemiologic Research: Characteristics of Regular and Nonregular Social Media Users in Nurses' Health Study II. Am J Epidemiol 2020; 189:156-161. [PMID: 31595957 DOI: 10.1093/aje/kwz224] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.4] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/22/2018] [Revised: 09/19/2019] [Accepted: 09/20/2019] [Indexed: 01/22/2023] Open
Abstract
With advances in natural language processing and machine learning, researchers are leveraging social media as a low-cost, low-burden method for measuring various psychosocial factors. However, it is unclear whether information derived from social media is generalizable to broader populations, especially middle-aged and older adults. Using data on women aged 53-70 years from Nurses' Health Study II (2017-2018; n = 49,045), we assessed differences in sociodemographic characteristics, health conditions, behaviors, and psychosocial factors between regular and nonregular users of Facebook (Facebook, Inc., Menlo Park, California). We evaluated effect sizes with phi (φ) coefficients (categorical data) or Cohen's d (continuous data) and calculated odds ratios with 95% confidence intervals. While most comparisons between regular and nonregular users achieved statistical significance in this large sample, effect sizes were mostly "very small" (conventionally defined as φ or d <0.01) (e.g., optimism score: meanregular users = 19 vs. meannonregular users = 19 (d = -0.03); physical activity: meanregular users = 24 metabolic equivalent of task (MET)-hours/week vs. meannonregular users = 24 MET-hours/week (d = 0.01)). Some factors had slightly larger differences for regular users versus nonregular users (e.g., depression: 28% vs. 23% (φ = 0.05); odds ratio = 1.27 (95% confidence interval: 1.22, 1.33); obesity: 34% vs. 26% (φ = 0.07); odds ratio = 1.42 (95% confidence interval: 1.36, 1.48)). Results suggest that regular Facebook users were similar to nonregular users across sociodemographic and psychosocial factors, with modestly worse health regarding obesity and depressive symptoms. In future research, investigators should evaluate other demographic groups.
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Affiliation(s)
- Eric S Kim
- Department of Social and Behavioral Sciences, T.H. Chan School of Public Health, Harvard University, Boston, Massachusetts
- Lee Kum Sheung Center for Health and Happiness, T.H. Chan School of Public Health, Harvard University, Boston, Massachusetts
- Human Flourishing Program, Institute for Quantitative Social Science, Harvard University, Cambridge, Massachusetts
| | - Peter James
- Department of Population Medicine, Harvard Medical School and Harvard Pilgrim Health Care Institute, Boston, Massachusetts
| | - Emily S Zevon
- Department of Social and Behavioral Sciences, T.H. Chan School of Public Health, Harvard University, Boston, Massachusetts
| | - Claudia Trudel-Fitzgerald
- Department of Social and Behavioral Sciences, T.H. Chan School of Public Health, Harvard University, Boston, Massachusetts
- Lee Kum Sheung Center for Health and Happiness, T.H. Chan School of Public Health, Harvard University, Boston, Massachusetts
| | - Laura D Kubzansky
- Department of Social and Behavioral Sciences, T.H. Chan School of Public Health, Harvard University, Boston, Massachusetts
- Lee Kum Sheung Center for Health and Happiness, T.H. Chan School of Public Health, Harvard University, Boston, Massachusetts
| | - Francine Grodstein
- Department of Epidemiology, T.H. Chan School of Public Health, Harvard University, Boston, Massachusetts
- Channing Division of Network Medicine, Department of Medicine, Brigham and Women’s Hospital and Harvard Medical School, Boston, Massachusetts
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46
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Favaretto M, De Clercq E, Schneble CO, Elger BS. What is your definition of Big Data? Researchers' understanding of the phenomenon of the decade. PLoS One 2020; 15:e0228987. [PMID: 32097430 PMCID: PMC7041862 DOI: 10.1371/journal.pone.0228987] [Citation(s) in RCA: 36] [Impact Index Per Article: 7.2] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/10/2019] [Accepted: 01/16/2020] [Indexed: 11/18/2022] Open
Abstract
The term Big Data is commonly used to describe a range of different concepts: from the collection and aggregation of vast amounts of data, to a plethora of advanced digital techniques designed to reveal patterns related to human behavior. In spite of its widespread use, the term is still loaded with conceptual vagueness. The aim of this study is to examine the understanding of the meaning of Big Data from the perspectives of researchers in the fields of psychology and sociology in order to examine whether researchers consider currently existing definitions to be adequate and investigate if a standard discipline centric definition is possible.
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Affiliation(s)
- Maddalena Favaretto
- Institute for Biomedical Ethics, University of Basel, Basel, Switzerland
- * E-mail:
| | - Eva De Clercq
- Institute for Biomedical Ethics, University of Basel, Basel, Switzerland
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Wilkins E, Aravani A, Downing A, Drewnowski A, Griffiths C, Zwolinsky S, Birkin M, Alvanides S, Morris MA. Evidence from big data in obesity research: international case studies. Int J Obes (Lond) 2020; 44:1028-1040. [PMID: 31988482 DOI: 10.1038/s41366-020-0532-8] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/23/2019] [Revised: 12/20/2019] [Accepted: 01/07/2020] [Indexed: 12/28/2022]
Abstract
BACKGROUND/OBJECTIVE Obesity is thought to be the product of over 100 different factors, interacting as a complex system over multiple levels. Understanding the drivers of obesity requires considerable data, which are challenging, costly and time-consuming to collect through traditional means. Use of 'big data' presents a potential solution to this challenge. Big data is defined by Delphi consensus as: always digital, has a large sample size, and a large volume or variety or velocity of variables that require additional computing power (Vogel et al. Int J Obes. 2019). 'Additional computing power' introduces the concept of big data analytics. The aim of this paper is to showcase international research case studies presented during a seminar series held by the Economic and Social Research Council (ESRC) Strategic Network for Obesity in the UK. These are intended to provide an in-depth view of how big data can be used in obesity research, and the specific benefits, limitations and challenges encountered. METHODS AND RESULTS Three case studies are presented. The first investigated the influence of the built environment on physical activity. It used spatial data on green spaces and exercise facilities alongside individual-level data on physical activity and swipe card entry to leisure centres, collected as part of a local authority exercise class initiative. The second used a variety of linked electronic health datasets to investigate associations between obesity surgery and the risk of developing cancer. The third used data on tax parcel values alongside data from the Seattle Obesity Study to investigate sociodemographic determinants of obesity in Seattle. CONCLUSIONS The case studies demonstrated how big data could be used to augment traditional data to capture a broader range of variables in the obesity system. They also showed that big data can present improvements over traditional data in relation to size, coverage, temporality, and objectivity of measures. However, the case studies also encountered challenges or limitations; particularly in relation to hidden/unforeseen biases and lack of contextual information. Overall, despite challenges, big data presents a relatively untapped resource that shows promise in helping to understand drivers of obesity.
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Affiliation(s)
- Emma Wilkins
- Leeds Institute for Data Analytics and School of Medicine, University of Leeds, Leeds, UK
| | - Ariadni Aravani
- Leeds Institute for Data Analytics and School of Medicine, University of Leeds, Leeds, UK
| | - Amy Downing
- Leeds Institute for Data Analytics and School of Medicine, University of Leeds, Leeds, UK
| | - Adam Drewnowski
- Center for Public Health Nutrition, University of Washington, Seattle, WA, USA
| | | | | | - Mark Birkin
- Leeds Institute for Data Analytics and School of Geography, University of Leeds, Leeds, UK
| | - Seraphim Alvanides
- Engineering and Environment, Northumbria University, Newcastle, UK.,GESIS-Leibniz Institute for the Social Sciences, Cologne, Germany
| | - Michelle A Morris
- Leeds Institute for Data Analytics and School of Medicine, University of Leeds, Leeds, UK.
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Abstract
PIC (Paediatric Intensive Care) is a large paediatric-specific, single-centre, bilingual database comprising information relating to children admitted to critical care units at a large children's hospital in China. The database is deidentified and includes vital sign measurements, medications, laboratory measurements, fluid balance, diagnostic codes, length of hospital stays, survival data, and more. The data are publicly available after registration, which includes completion of a training course on research with human subjects and signing of a data use agreement mandating responsible handling of the data and adherence to the principle of collaborative research. Although the PIC can be considered an extension of the widely used MIMIC (Medical Information Mart for Intensive Care) database in the field of paediatric critical care, it has many unique characteristics and can support database-based academic and industrial applications such as machine learning algorithms, clinical decision support tools, quality improvement initiatives, and international data sharing.
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49
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Aiello AE, Renson A, Zivich PN. Social Media- and Internet-Based Disease Surveillance for Public Health. Annu Rev Public Health 2020; 41:101-118. [PMID: 31905322 DOI: 10.1146/annurev-publhealth-040119-094402] [Citation(s) in RCA: 134] [Impact Index Per Article: 26.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/29/2022]
Abstract
Disease surveillance systems are a cornerstone of public health tracking and prevention. This review addresses the use, promise, perils, and ethics of social media- and Internet-based data collection for public health surveillance. Our review highlights untapped opportunities for integrating digital surveillance in public health and current applications that could be improved through better integration, validation, and clarity on rules surrounding ethical considerations. Promising developments include hybrid systems that couple traditional surveillance data with data from search queries, social media posts, and crowdsourcing. In the future, it will be important to identify opportunities for public and private partnerships, train public health experts in data science, reduce biases related to digital data (gathered from Internet use, wearable devices, etc.), and address privacy. We are on the precipice of an unprecedented opportunity to track, predict, and prevent global disease burdens in the population using digital data.
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Affiliation(s)
- Allison E Aiello
- Department of Epidemiology, Carolina Population Center, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina 27599-7435, USA; , ,
| | - Audrey Renson
- Department of Epidemiology, Carolina Population Center, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina 27599-7435, USA; , ,
| | - Paul N Zivich
- Department of Epidemiology, Carolina Population Center, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina 27599-7435, USA; , ,
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50
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Bearth A, Siegrist M. Psychological factors that determine people's willingness-to-share genetic data for research. Clin Genet 2019; 97:483-491. [PMID: 31833061 DOI: 10.1111/cge.13686] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/03/2019] [Revised: 11/27/2019] [Accepted: 12/03/2019] [Indexed: 11/28/2022]
Abstract
Of all the information that we share, health and genetic data might be among the most valuable for researchers. As data are handled as particularly sensitive information, a number of pressing issues regarding people's preferences and privacy concerns are raised. The goal of the present study was to contribute to an understanding of people's reported willingness-to-share genetic data for science (WTS). For this, predictive psychological factors (eg, risk and benefit perceptions, trust, knowledge) were investigated in an online survey (N = 416). Overall, participants seemed willing to provide their genetic data for research. Participants who perceived more benefits associated with data sharing were particularly willing to share their data for research (β = .29), while risk perceptions were less influential (β = -.14). As participants with higher knowledge of the potential uses of genetic data for research perceived more benefits (β = .20), WTS can likely be improved by providing people with information regarding the usefulness of genetic data for research. In addition to knowledge and perceptions, trust in data recipients increased people's willingness-to-share directly (β = .24). Especially in the sensitive area of genetic data, future research should strive to understand people's shifting perceptions and preferences.
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Affiliation(s)
- Angela Bearth
- Consumer Behavior, Institute for Environmental Decisions, ETH Zurich, Zurich, Switzerland
| | - Michael Siegrist
- Consumer Behavior, Institute for Environmental Decisions, ETH Zurich, Zurich, Switzerland
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