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.

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 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 Digital Phenotyping and Patient-Generated Health Data for Outcome Measurement in Surgical Care: A Scoping Review

2020 ◽  
Vol 10 (4) ◽  
pp. 282
Author(s):  
Prakash Jayakumar ◽  
Eugenia Lin ◽  
Vincent Galea ◽  
Abraham J. Mathew ◽  
Nikhil Panda ◽  
...  
Keyword(s):  
Scoping Review ◽  
Outcome Measurement ◽  
Clinical Care ◽  
Surgical Care ◽  
Health Data ◽  
The Body ◽  
Bibliographic Databases ◽  
Digital Phenotyping ◽  
Scoping Reviews ◽  
Patient Reported

Digital phenotyping—the moment-by-moment quantification of human phenotypes in situ using data related to activity, behavior, and communications, from personal digital devices, such as smart phones and wearables—has been gaining interest. Personalized health information captured within free-living settings using such technologies may better enable the application of patient-generated health data (PGHD) to provide patient-centered care. The primary objective of this scoping review is to characterize the application of digital phenotyping and digitally captured active and passive PGHD for outcome measurement in surgical care. Secondarily, we synthesize the body of evidence to define specific areas for further work. We performed a systematic search of four bibliographic databases using terms related to “digital phenotyping and PGHD,” “outcome measurement,” and “surgical care” with no date limits. We registered the study (Open Science Framework), followed strict inclusion/exclusion criteria, performed screening, extraction, and synthesis of results in line with the PRISMA Extension for Scoping Reviews. A total of 224 studies were included. Published studies have accelerated in the last 5 years, originating in 29 countries (mostly from the USA, n = 74, 33%), featuring original prospective work (n = 149, 66%). Studies spanned 14 specialties, most commonly orthopedic surgery (n = 129, 58%), and had a postoperative focus (n = 210, 94%). Most of the work involved research-grade wearables (n = 130, 58%), prioritizing the capture of activity (n = 165, 74%) and biometric data (n = 100, 45%), with a view to providing a tracking/monitoring function (n = 115, 51%) for the management of surgical patients. Opportunities exist for further work across surgical specialties involving smartphones, communications data, comparison with patient-reported outcome measures (PROMs), applications focusing on prediction of outcomes, monitoring, risk profiling, shared decision making, and surgical optimization. The rapidly evolving state of the art in digital phenotyping and capture of PGHD offers exciting prospects for outcome measurement in surgical care pending further work and consideration related to clinical care, technology, and implementation.

scholarly journals Patient and Public Involvement (PPI) in preclinical research: A scoping review protocol

2021 ◽  
Vol 4 ◽  
pp. 61
Author(s):  
Pádraig Carroll ◽  
Adrian Dervan ◽  
Anthony Maher ◽  
Ciarán McCarthy ◽  
Ian Woods ◽  
...  
Keyword(s):  
Scoping Review ◽  
Public Involvement ◽  
Positive Impact ◽  
Patient And Public Involvement ◽  
The Body ◽  
Current Evidence ◽  
Future Research ◽  
Advisory Panel ◽  
Preclinical Research ◽  
Scoping Reviews

Introduction: Patient and public involvement (PPI) aims to improve the quality, relevance, and appropriateness of research and ensure that it meets the needs and expectations of those affected by particular conditions to the greatest possible degree. The evidence base for the positive impact of PPI on clinical research continues to grow, but the role of PPI in preclinical research (an umbrella term encompassing ‘basic’, ‘fundamental’, ‘translational’ or ‘lab-based’ research) remains limited. As funding bodies and policymakers continue to increase emphasis on the relevance of PPI to preclinical research, it is timely to map the PPI literature to support preclinical researchers involving the public, patients, or other service users in their research. Therefore, the aim of this scoping review is to explore the literature on patient and public involvement in preclinical research from any discipline. Methods: This scoping review will search the literature in Medline (PubMed), Embase, CINAHL, PsycINFO, Web of Science Core Collection, Scopus, and OpenGrey.net to explore the application of PPI in preclinical research. This review will follow the Joanna Briggs Institute (JBI) guidelines for scoping reviews. It will be reported according to the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). Two reviewers will independently review articles for inclusion in the final review. Data extraction will be guided by the research questions. The PPI advisory panel will then collaboratively identify themes in the extracted data. Discussion: This scoping review will provide a map of current evidence surrounding preclinical PPI, and identify the body of literature on this topic, which has not been comprehensively reviewed to date. Findings will inform ongoing work of the research team, support the work of other preclinical researchers aiming to include PPI in their own research, and identify knowledge and practice gaps. Areas for future research will be identified.

Overview of the role of big data in mental health: A scoping review (Preprint)

2021 ◽  
Author(s):  
Arfan Ahmed ◽  
Sarah Aziz ◽  
Marco Angus ◽  
Mahmood Alzubaidi ◽  
Alaa Abd-Alrazaq ◽  
...  
Keyword(s):  
Mental Health ◽  
Machine Learning ◽  
Big Data ◽  
Scoping Review ◽  
Mental Health Disorders ◽  
Machine Learning Techniques ◽  
Support Vector ◽  
Great Effort ◽  
Scoping Reviews ◽  
Health Disorders

BACKGROUND Big Data offers promise in the field of mental health and plays an important part when it comes to automation, analysis and prevention of mental health disorders OBJECTIVE The purpose of this scoping review is to explore how big data was exploited in mental health. This review specifically addresses both the volume, velocity, veracity and variety of collected data as well as how data was attained, stored, managed, and kept private and secure. METHODS Six databases were searched to find relevant articles. PRISMA Extension for Scoping Reviews (PRISMA-ScR) was used as a guideline methodology to develop a comprehensive scoping review. RESULTS General and Big Data features were extracted from the studies reviewed. Various technologies were noted when it comes to using Big Data in mental health with depression and anxiety being the focus of most of the studies. Some of these included Machine Learning (ML) models in 22 studies of which Random Forest (RF) was the most widely used. Logistic Regression (LR) was used in 4 studies, and Support Vector Machine (SVM) was used in 3 studies. CONCLUSIONS In order to utilize Big Data as a way to mitigate mental health disorders and prevent their appearance altogether a great effort is still needed. Integration and analysis of Big Data, doctors and researchers alike can find patterns in otherwise difficult to identify data by making use of AI and Machine Learning techniques. Similarly, machine learning and artificial intelligence can be used to automate the analytical process.

scholarly journals Menstrual experience of adolescents in the USA: protocol for a scoping review

BMJ Open ◽  
2021 ◽  
Vol 11 (2) ◽  
pp. e040511
Author(s):  
Ronke Olowojesiku ◽  
Deborah J Shim ◽  
Bryanna Moppins ◽  
Daye Park ◽  
Jasmine O Patterson ◽  
...  
Keyword(s):  
Social Services ◽  
Scoping Review ◽  
Low Income ◽  
Research Team ◽  
Grey Literature ◽  
The Body ◽  
Primary Study ◽  
Scoping Reviews ◽  
The Usa ◽  
The Impact

IntroductionIn recent years, there has been a growing desire to address issues related to menstruation, particularly for adolescent girls. In low-income and middle-income countries, prior literature review of the adolescent menstrual experience suggests the need for further research into the impact and efficacy of interventions with this population. There is evidence to suggest the need for initiatives and research in higher-income countries like the USA. To date, the body of research on adolescent menstrual experience in the USA remains uncharacterised. Therefore, we propose a scoping review of the literature on this subject to better inform on areas for future primary study.Methods and analysesUsing the framework proposed by Arksey and O’Malley and expounded on by Levac et al and the Joanna Briggs Institute, we will search electronic databases (MEDLINE, CINAHL, PsycINFO, Web of Science, ProQuest Public Health Database, Social Science Citation Index, Social Services Abstracts and SocINDEX) and grey literature for relevant studies in consultation with experienced librarians. The abstracts and full-text from each reference will be screened by two independent reviewers for inclusion. Bibliographic data, study characteristics and themes will be extracted from studies selected for inclusion using a rubric created by the research team. Findings will be summarised and a list of subject areas for future primary research will be generated in consultation with stakeholders. The review will be conducted using the Preferred Reporting Items from Systematic Reviews and Meta-Analyses extension for Scoping Reviews guidelines.Ethics and disseminationFormal ethics training for this study is not required, as the research team will review publicly available studies. Stakeholders working in adolescent and menstrual health were consulted in designing this review. We will share key findings with stakeholders and in scholarly journals at the conclusion of the review.

scholarly journals Patient and Public Involvement (PPI) in preclinical research: A scoping review protocol

2021 ◽  
Vol 4 ◽  
pp. 61
Author(s):  
Pádraig Carroll ◽  
Adrian Dervan ◽  
Anthony Maher ◽  
Ciarán McCarthy ◽  
Ian Woods ◽  
...  
Keyword(s):  
Scoping Review ◽  
Public Involvement ◽  
Positive Impact ◽  
Patient And Public Involvement ◽  
The Body ◽  
Current Evidence ◽  
Future Research ◽  
Advisory Panel ◽  
Preclinical Research ◽  
Scoping Reviews

Introduction: Patient and public involvement (PPI) aims to improve the quality, relevance, and appropriateness of research and ensure that it meets the needs and expectations of those affected by particular conditions to the greatest possible degree. The evidence base for the positive impact of PPI on clinical research continues to grow, but the role of PPI in preclinical research (an umbrella term encompassing ‘basic’, ‘fundamental’, ‘translational’ or ‘lab-based’ research) remains limited. As funding bodies and policymakers continue to increase emphasis on the relevance of PPI to preclinical research, it is timely to map the PPI literature to support preclinical researchers involving the public, patients, or other service users in their research. Therefore, the aim of this scoping review is to explore the literature on patient and public involvement in preclinical research from any discipline. Methods: This scoping review will search the literature in Medline (PubMed), Embase, CINAHL, PsycINFO, Web of Science Core Collection, Scopus, and OpenGrey.net to explore the application of PPI in preclinical research. This review will follow the Joanna Briggs Institute (JBI) guidelines for scoping reviews. It will be reported according to the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). Two reviewers will independently review articles for inclusion in the final review. Data extraction will be guided by the research questions. The PPI advisory panel will then collaboratively identify themes in the extracted data. Discussion: This scoping review will provide a map of current evidence surrounding preclinical PPI, and identify the body of literature on this topic, which has not been comprehensively reviewed to date. Findings will inform ongoing work of the research team, support the work of other preclinical researchers aiming to include PPI in their own research, and identify knowledge and practice gaps. Areas for future research will be identified.

scholarly journals The Impact of Long-term Care Needs on the Socio-economic Deprivation of Older People and Their Families: a Scoping Review Protocol

2021 ◽  
Author(s):  
Rossella Martarelli ◽  
Georgia Casanova ◽  
Giovanni Lamura
Keyword(s):  
Systematic Reviews ◽  
Scoping Review ◽  
Social Innovation ◽  
The Body ◽  
Economic Deprivation ◽  
Term Care ◽  
Interdisciplinary Approaches ◽  
Scoping Reviews ◽  
Meta Analyses ◽  
The Impact

Abstract BackgroundPopulation ageing, constantly on the increase in all countries worldwide, has long been the object of scientific research from several perspectives, including multi and interdisciplinary approaches. This scoping review aims to investigate the socio-economic consequences of older people’s poor health on their own economic conditions and those of their families. This study aims to: a) map the main concepts that characterise the body of literature pertaining to this issue; b) identify conceptual gaps or unexplored research areas to be addressed; c) delve into the ways of arguing about the difficulties that affect a large number of families with older members to care for, especially with regard to the concept of socio-economic deprivation, which in our perspective includes both material and social deprivation (e.g. in the form of loneliness experienced as a consequence of health disorders). This protocol fulfils the purpose of clarifying the stages and methods of the study and listing the techniques used.MethodsThis article is being drafted according to the Preferred Reporting Items for Systematic reviews and Meta-Analyses for Protocols 2015 (PRISMA-P 2015). The rationale behind the study and its stages are aligned with the guidelines of Lockwood et al. (2019) and the recommendations of Munn et al. (2018): Each stage links up with the next, according to the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (the 2020 PRISMA Statement), while the reporting phase refers to the Joanna Briggs Institute (JBI) checklist. The search process is being performed by means of databases such as PubMed, Scopus and Web of Science. The latest version of MAXQDA will be used for analyzing all data.Discussion We aim to highlight and connect the most useful insights addressed to stakeholders and policymakers and, most of all, the ones valuable to social innovation. Nevertheless, it is necessary for us to remark that, despite the prevalence of the English language, most research articles are written and published in other languages. Therefore, they are excluded from the search process.Systematic review registration Open Science Framework (OSF), https://osf.io/xq58z Registration DOI: 10.17605/OSF.IO/XQ58Z

scholarly journals Landscape of Participant-Centric Initiatives for Medical Research in the United States, the United Kingdom, and Japan: Scoping Review (Preprint)

2019 ◽  
Author(s):  
Nao Hamakawa ◽  
Rumiko Nakano ◽  
Atsushi Kogetsu ◽  
Victoria Coathup ◽  
Jane Kaye ◽  
...  
Keyword(s):  
United States ◽  
Decision Making ◽  
United Kingdom ◽  
Medical Research ◽  
Scoping Review ◽  
Grey Literature ◽  
The United States ◽  
Active Involvement ◽  
The United Kingdom ◽  
Scoping Reviews

BACKGROUND Information and communication technology (ICT) has made remarkable progress in recent years and is being increasingly applied to medical research. This technology has the potential to facilitate the active involvement of research participants. Digital platforms that enable participants to be involved in the research process are called participant-centric initiatives (PCIs). Several PCIs have been reported in the literature, but no scoping reviews have been carried out. Moreover, detailed methods and features to aid in developing a clear definition of PCIs have not been sufficiently elucidated to date. OBJECTIVE The objective of this scoping review is to describe the recent trends in, and features of, PCIs across the United States, the United Kingdom, and Japan. METHODS We applied a methodology suggested by Levac et al to conduct this scoping review. We searched electronic databases—MEDLINE (Medical Literature Analysis and Retrieval System Online), Embase (Excerpta Medica Database), CINAHL (Cumulative Index of Nursing and Allied Health Literature), PsycINFO, and Ichushi-Web—and sources of grey literature, as well as internet search engines—Google and Bing. We hand-searched through key journals and reference lists of the relevant articles. Medical research using ICT was eligible for inclusion if there was a description of the active involvement of the participants. RESULTS Ultimately, 21 PCIs were identified that have implemented practical methods and modes of various communication activities, such as patient forums and use of social media, in the field of medical research. Various methods of decision making that enable participants to become involved in setting the agenda were also evident. CONCLUSIONS This scoping review is the first study to analyze the detailed features of PCIs and how they are being implemented. By clarifying the modes and methods of various forms of communication and decision making with patients, this review contributes to a better understanding of patient-centric involvement, which can be facilitated by PCIs. INTERNATIONAL REGISTERED REPORT RR2-10.2196/resprot.7407

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.

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