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.

scholarly journals The Academic Viewpoint on Patient Data Ownership in the Context of Big Data: Scoping Review

10.2196/22214 ◽  
2020 ◽  
Vol 22 (8) ◽  
pp. e22214
Author(s):  
Martin Mirchev ◽  
Iskra Mircheva ◽  
Albena Kerekovska
Keyword(s):  
Big Data ◽  
Medical Research ◽  
Information And Communication Technologies ◽  
Patient Information ◽  
Scoping Review ◽  
Patient Data ◽  
Academic Community ◽  
The Body ◽  
Scoping Reviews ◽  
Data Ownership

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.

scholarly journals The Academic Viewpoint on Patient Data Ownership in the Context of Big Data: Scoping Review (Preprint)

2020 ◽  
Author(s):  
Martin Mirchev ◽  
Iskra Mircheva ◽  
Albena Kerekovska
Keyword(s):  
Big Data ◽  
Medical Research ◽  
Information And Communication Technologies ◽  
Patient Information ◽  
Scoping Review ◽  
Patient Data ◽  
Academic Community ◽  
The Body ◽  
Scoping Reviews ◽  
Data Ownership

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.

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 Future of Medical Research in Rare Diseases and Cancers: Shift from Pharma to Biotech and the Golden Age of Medical Advancement

2017 ◽  
Vol 6 (2) ◽  
pp. 12
Author(s):  
Abhith Pallegar
Keyword(s):  
Big Data ◽  
Medical Research ◽  
Rare Diseases ◽  
Network Effects ◽  
Medical Knowledge ◽  
Economic Cost ◽  
Medical Data ◽  
Data Sets ◽  
Leading Role ◽  
Diverse Data

The objective of the paper is to elucidate how interconnected biological systems can be better mapped and understood using the rapidly growing area of Big Data. We can harness network efficiencies by analyzing diverse medical data and probe how we can effectively lower the economic cost of finding cures for rare diseases. Most rare diseases are due to genetic abnormalities, many forms of cancers develop due to genetic mutations. Finding cures for rare diseases requires us to understand the biology and biological processes of the human body. In this paper, we explore what the historical shift of focus from pharmacology to biotechnology means for accelerating biomedical solutions. With biotechnology playing a leading role in the field of medical research, we explore how network efficiencies can be harnessed by strengthening the existing knowledge base. Studying rare or orphan diseases provides rich observable statistical data that can be leveraged for finding solutions. Network effects can be squeezed from working with diverse data sets that enables us to generate the highest quality medical knowledge with the fewest resources. This paper examines gene manipulation technologies like Clustered Regularly Interspaced Short Palindromic Repeats (CRISPR) that can prevent diseases of genetic variety. We further explore the role of the emerging field of Big Data in analyzing large quantities of medical data with the rapid growth of computing power and some of the network efficiencies gained from this endeavor. 

The Future of Nurse Scholarship: The Ethical Challenges

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

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

scholarly journals Big Data, Big Responsibility! Building best-practice privacy strategies into a large-scale neuroinformatics platform

2017 ◽  
Vol 1 (1) ◽  
Author(s):  
Christina Popovich ◽  
Francis Jeanson ◽  
Brendan Behan ◽  
Shannon Lefaivre ◽  
Aparna Shukla
Keyword(s):  
Big Data ◽  
Data Sharing ◽  
Patient Information ◽  
Neurological Disorders ◽  
Large Scale ◽  
Best Practice ◽  
Patient Data ◽  
Multidimensional Data ◽  
Neuroscience Research ◽  
Secure Data

ABSTRACT ObjectiveThe Ontario Brain Institute (OBI) has begun to catalyze scientific discovery in the field of neuroscience through its’ large-scale informatics platform, known as Brain-CODE (Centre for Ontario Data Exploration). Brain-CODE manages the acquisition, storage, processing, and analytics of multidimensional data collected from patients with a variety of brain disorders. Our vision is for the platform to act as an informatics catalyst; encouraging multidisciplinary research collaboration, data integration, and innovation in neuroscience research. Brain-CODE’s infrastructure was designed with best-practice privacy strategies built at the forefront to enable secure data capture of sensitive patient information in a manner that abides by government legislation while fostering data sharing and linking opportunities. ApproachPrivacy and security features have been incorporated into the very foundation of Brain-CODE’s comprehensive guidelines, which are reinforced by our state-of-the-art approaches to keep patient data safe. To ensure clarity for study participants, we have developed standard consent language outlining how sensitive patient data will be collected, entered, de-identified, and shared using Brain-CODE. Moreover, our tiered approach to data accessibility enables the storage of encrypted Ontario Health Card Numbers as well as other patient information, secure long-term storage of de-identified data, and data sharing opportunities by request from third parties following risk-based analysis re-identification techniques. OBI has also established a comprehensive Information Security Policy and Informatics Governance Policies, as well as a carried out a Privacy Impact Assessment and Threat Risk Assessment for Brain-CODE. ResultsBrain-CODE is proudly named a "Privacy by Design" Ambassador by the Office of the Information and Privacy Commissioner of Ontario, Canada. Moreover, approximately 200 neuroscience researchers and 35 institutions from across Canada have adopted our standard consent language to enable secure data sharing within and across neurological disorders as well as linkage opportunities with national and international databases in a secure environment. ConclusionOBI’s rigorous approach to data sharing in the field of neuroscience maintains the accessibility of research data for big discoveries without compromising patient privacy and security. We believe that Brain-CODE is a powerful and advantageous tool; moving neuroscience research from independent silos to an integrative system approach for improving patient health. OBI’s vision for improved brain health for patients living with neurological disorders paired with Brain-CODE’s best-practice strategies in privacy protection of patient data offer a novel and innovative approach to “big data” initiatives aimed towards improving public health and society world-wide.

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 Patient information ownership in the age of digital health and big data

2019 ◽  
Vol 29 (Supplement_4) ◽  
Author(s):  
M Mirchev
Keyword(s):  
Public Health ◽  
Big Data ◽  
Data Analytics ◽  
Personal Information ◽  
Digital Health ◽  
Clinical Care ◽  
Personal Data ◽  
Health Data ◽  
Patient Data ◽  
Long Run

Abstract Background In the context of digital health and the increasing capabilities to derive, store and use information, Big data, and data analytics provide an exceptional perspective towards the evolution of medicine and public health. We collect patient data at unimaginable scale thanks to technological improvements such as wearables, sensors, smart and mobile devices. We are digitizing health on our way to improve cares. The other side of the coin reveals specific issues: it is all about personal information. The risks we face in regard to privacy, autonomy and ultimately justice are worth debating. Aim To consider whether ownership of patient data in the context of digital health and Big data is a good way to guarantee both privacy and the social interest in the field of public health. Methods Historical, documental, ethical research. Results The abilities to collect and store zettabytes of health-related information is spectacular, but learning how to structure and optimize the use of this information is pivotal for the future of public health. People are sensitive in terms of “ownership”, rights and privacy, although the idea for actual ownership of health information is not quite popular. Given the fact, that it is personal data, a lot of concerns are related to ensuring privacy. One way to do it is by recognizing patient ownership over their data. The major issue with this, is that it might limit, or even prevent public interest, and so the public benefits. Having in mind the huge commercial interest in health data, that concern looks relevant. When applied in healthcare Big data has the potential to provide important data analytics, which means that we can move to next step in healthcare development - improving disease prevention and health promotion, which are vastly ignored in favor of clinical care. In this specific environment, it is highly questionable whether patient`s ownership would bring more benefit, than harms in the shared goal of improving healthcare. Key messages What people might do if their health data is their property, might reflect in a bad way the common goal to structure and use it for health improving. Patient data ownership might not be reasonable in the long run, even though from an ethical standpoint and with regard to patient`s autonomy looks fair.

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