Navigating the Ethics of Big Data in Public Health

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

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

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

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

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

scholarly journals Informatics and Data Analytics to Support Exposome-Based Discovery for Public Health

2017 ◽  
Vol 38 (1) ◽  
pp. 279-294 ◽  
Author(s):  
Arjun K. Manrai ◽  
Yuxia Cui ◽  
Pierre R. Bushel ◽  
Molly Hall ◽  
Spyros Karakitsios ◽  
...  
Keyword(s):  
Public Health ◽  
Data Analytics ◽  
Public Health Research ◽  
Public Health Genomics ◽  
Public Health Community ◽  
Human Genomics ◽  
The Public ◽  
Health Community ◽  
Genomics Research ◽  
Data Ecosystem

The complexity of the human exposome—the totality of environmental exposures encountered from birth to death—motivates systematic, high-throughput approaches to discover new environmental determinants of disease. In this review, we describe the state of science in analyzing the human exposome and provide recommendations for the public health community to consider in dealing with analytic challenges of exposome-based biomedical research. We describe extant and novel analytic methods needed to associate the exposome with critical health outcomes and contextualize the data-centered challenges by drawing parallels to other research endeavors such as human genomics research. We discuss efforts for training scientists who can bridge public health, genomics, and biomedicine in informatics and statistics. If an exposome data ecosystem is brought to fruition, it will likely play a role as central as genomic science has had in molding the current and new generations of biomedical researchers, computational scientists, and public health research programs.

scholarly journals Closing the gaps in defining and conceptualising acceptability of healthcare: A synthesis review and thematic content analysis

2020 ◽  
Author(s):  
Blaise Joy Bucyibaruta ◽  
Doriccah Peu ◽  
Lesley Bamford ◽  
Annatjie van der Wath
Keyword(s):  
Public Health ◽  
Content Analysis ◽  
Conceptual Framework ◽  
Public Health Research ◽  
Thematic Content Analysis ◽  
Thematic Content ◽  
The Public ◽  
Health Community ◽  
Acceptability Of Healthcare ◽  
Definition Of

Abstract Background: Acceptability of healthcare is gaining ground in public health research and practice. Overlooking healthcare acceptability when designing, implementing, monitoring and assessing healthcare interventions may lead to those interventions failing. Despite the importance of acceptability, the public health community still has to agree on an explicit definition and conceptual framework of acceptability. We considered different definitions and conceptual frameworks of healthcare acceptability, and identified commonalities to develop an integrated definition of healthcare acceptability. Methods: We conducted a synthesis review and thematic content analysis of research articles that attempt to define healthcare acceptability. We searched online databases including MEDLINE/PubMed, Cochrane Library and Google Scholar for relevant articles. The retained articles were imported into ATLAS.ti 8.4. Using thematic content analysis, we deductively and inductively coded categories and themes related to definitions and frameworks of healthcare acceptability. Results: Our review of the literature described the complexity of healthcare acceptability. The concept of acceptability remains poorly defined limiting its application in public health. We propose a definition of acceptability that includes the needs and expectations of the healthcare recipient, healthcare provider as well as the capacity of the healthcare systems. We define acceptability as a multi-construct concept describing nonlinear cumulative combination in parts or in whole of expected and experienced degree of healthcare from patient, provider or health systems and policy perspectives in a given context. We provide a conceptual framework of acceptability, applicable to the public health research and practice. Conclusion: We present a definition of acceptability that can be applied to different actors of public health including patients, providers, and health systems or policy. The proposed definition of acceptability, together with the conceptual framework provides a coherent conceptualisation that can be used by the broader public health community.

Corrupt Practices in the Public Health Sector: A Focus on Metropolitan Local Government Areas of Kano State, Nigeria

2020 ◽  
Vol 18 (2) ◽  
pp. 149
Author(s):  
Mohammed Mustapha Namadi
Keyword(s):  
Public Health ◽  
Local Government ◽  
Health Sector ◽  
Sampling Technique ◽  
Healthcare Services ◽  
Healthcare Sector ◽  
Healthcare Provision ◽  
The Public ◽  
Public Health Sector ◽  
The Government

Corruption is pervasive in Nigeria at all levels. Thus, despite recent gains in healthcare provision, the health sector faces numerous corruption related challenges. This study aims at examining areas of corruption in the health sector with specific focus on its types and nature. A sample size of 480 respondents aged 18 years and above was drawn from the eight Metropolitan Local Government Areas of Kano State, using the multistage sampling technique. The results revealed evidence of corrupt practices including those related to unnecessary-absenteeism, diversion of patients from the public health facilities to the private sector, diverting money meant for the purchase of equipment, fuel and diesel, bribery, stealing of medications, fraud, misappropriation of medications and unjustifiable reimbursement claims. In order to resolve the problem of corrupt practices in the healthcare sector, the study recommended the need for enforcement of appropriate code of ethics guiding the conduct of the health professionals, adoption of anti-corruption strategies, and strengthening the government monitoring system to check corruption in public health sector in order to ensure equitable access to healthcare services among the under-privileged people in the society.

scholarly journals Green Deal as a Climate Changes Dam on the Road to Health

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
M Jevtic ◽  
C Bouland
Keyword(s):  
Public Health ◽  
Climate Change ◽  
Circular Economy ◽  
Clinical Medicine ◽  
Health Sector ◽  
The Public ◽  
The Road ◽  
National Public Health ◽  
On The Road ◽  
The Impact

Abstract Public health professionals (PHP) have a dual task in climate change. They should persuade their colleagues in clinical medicine of the importance of all the issues covered by the GD. The fact that the health sector contributes to the overall emissions of 4.4% speaks to the lack of awareness within the health sector itself. The issue of providing adequate infrastructure for the health sector is essential. Strengthening the opportunities and development of the circular economy within healthcare is more than just a current issue. The second task of PHP is targeting the broader population. The public health mission is being implemented, inter alia, through numerous activities related to environmental monitoring and assessment of the impact on health. GD should be a roadmap for priorities and actions in public health, bearing in mind: an ambitious goal of climate neutrality, an insistence on clean, affordable and safe energy, a strategy for a clean and circular economy. GD provides a framework for the development of sustainable and smart transport, the development of green agriculture and policies from field to table. It also insists on biodiversity conservation and protection actions. The pursuit of zero pollution and an environment free of toxic chemicals, as well as incorporating sustainability into all policies, is also an indispensable part of GD. GD represents a leadership step in the global framework towards a healthier future and comprises all the non-EU members as well. The public health sector should consider the GD as an argument for achieving goals at national levels, and align national public health policies with the goals of this document. There is a need for stronger advocacy of health and public-health interests along with incorporating sustainability into all policies. Achieving goals requires the education process for healthcare professionals covering all of topics of climate change, energy and air pollution to a much greater extent than before.

scholarly journals Identifying and bridging the knowledge-to-practice gaps in rehabilitation professionals working with at-risk infants in the public health sector of South Africa: a multimethod study protocol

BMJ Open ◽  
2021 ◽  
Vol 11 (5) ◽  
pp. e039242
Author(s):  
Pragashnie Govender
Keyword(s):  
Public Health ◽  
South Africa ◽  
At Risk ◽  
Neonatal Intensive Care ◽  
Qualitative Data ◽  
Health Sector ◽  
Critical Time ◽  
Reliability And Validity ◽  
The Public ◽  
Public Health Sector

IntroductionEarly childhood is a critical time when the benefits of early interventions are intensified, and the adverse effects of risk can be reduced. For the optimal provision of early intervention, professionals in the field are required to have specialised knowledge and skills in implementing these programmes. In the context of South Africa, there is evidence to suggest that therapists are ill-prepared to handle the unique challenges posed in neonatal intensive care units and wards with at-risk infants in the first few weeks of life. This is attributed to several reasons; however, irrespective of the causative factors, the need to bridge this knowledge-to-practice gap remains essential.Methods and analysisThis study is a multimethod stakeholder-driven study using a scoping review followed by an appreciative inquiry and Delphi process that will aid in the development, implementation and evaluation of a knowledge translation intervention to bridge knowledge-gaps in occupational and physiotherapists working in the field. Therapists currently working in the public health sector will be recruited for participation in the various stages of the study. The analysis will occur via thematic analysis for qualitative data and percentages and frequencies for descriptive quantitative data. Issues around trustworthiness and rigour, and reliability and validity, will be ensured within each of the phases, by use of a content validity index and inter-rater reliability for the Delphi survey; thick descriptions, peer debriefing, member checking and an audit trail for the qualitative data.Ethics and disseminationThe study has received full ethical approval from the Health Research and Knowledge Management Directorate of the Department of Health and a Biomedical Research Ethics Committee. The results will be published in peer-reviewed academic journals and disseminated to the relevant stakeholders within this study.

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

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

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

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