Dataset Information

Big Data Needs Big Governance: Best Practices From Brain-CODE, the Ontario-Brain Institute's Neuroinformatics Platform.

ABSTRACT: The 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. The platform supports the capture, storage, federation, sharing, and analysis of different data types across several brain disorders. Underlying the platform is a robust and scalable data governance structure which allows for the flexibility to advance scientific understanding, while protecting the privacy of research participants. Recognizing the value of an open science approach to enabling discovery, the governance structure was designed not only to support collaborative research programs, but also to support open science by making all data open and accessible in the future. OBI's rigorous approach to data sharing maintains the accessibility of research data for big discoveries without compromising privacy and security. Taking a Privacy by Design approach to both data sharing and development of the platform has allowed OBI to establish some best practices related to large-scale data sharing within Canada. The aim of this report is to highlight these best practices and develop a key open resource which may be referenced during the development of similar open science initiatives.

SUBMITTER: Lefaivre S

PROVIDER: S-EPMC6450217 | biostudies-literature | 2019

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Big Data Needs Big Governance: Best Practices From Brain-CODE, the Ontario-Brain Institute's Neuroinformatics Platform.

Lefaivre Shannon S Behan Brendan B Vaccarino Anthony A Evans Kenneth K Dharsee Moyez M Gee Tom T Dafnas Costa C Mikkelsen Tom T Theriault Elizabeth E

Frontiers in genetics 20190329

The 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. The platform supports the capture, storage, federation, sharing, and analysis of different data types across several brain disorders. Underlying the platform is a robust and scalable data governance structure which allows for the flexibility to advance scientific understanding, while protecting the privacy of research partici ...[more]

PMID: 30984233

Similar Datasets

Project description:Developing or independently evaluating algorithms in biomedical research is difficult because of restrictions on access to clinical data. Access is restricted because of privacy concerns, the proprietary treatment of data by institutions (fueled in part by the cost of data hosting, curation, and distribution), concerns over misuse, and the complexities of applicable regulatory frameworks. The use of cloud technology and services can address many of the barriers to data sharing. For example, researchers can access data in high performance, secure, and auditable cloud computing environments without the need for copying or downloading. An alternative path to accessing data sets requiring additional protection is the model-to-data approach. In model-to-data, researchers submit algorithms to run on secure data sets that remain hidden. Model-to-data is designed to enhance security and local control while enabling communities of researchers to generate new knowledge from sequestered data. Model-to-data has not yet been widely implemented, but pilots have demonstrated its utility when technical or legal constraints preclude other methods of sharing. We argue that model-to-data can make a valuable addition to our data sharing arsenal, with 2 caveats. First, model-to-data should only be adopted where necessary to supplement rather than replace existing data-sharing approaches given that it requires significant resource commitments from data stewards and limits scientific freedom, reproducibility, and scalability. Second, although model-to-data reduces concerns over data privacy and loss of local control when sharing clinical data, it is not an ethical panacea. Data stewards will remain hesitant to adopt model-to-data approaches without guidance on how to do so responsibly. To address this gap, we explored how commitments to open science, reproducibility, security, respect for data subjects, and research ethics oversight must be re-evaluated in a model-to-data context.

Dataset Information

Big Data Needs Big Governance: Best Practices From Brain-CODE, the Ontario-Brain Institute's Neuroinformatics Platform.

Publications

Big Data Needs Big Governance: Best Practices From Brain-CODE, the Ontario-Brain Institute's Neuroinformatics Platform.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets