Orchestrating differential data access for translational research: a pilot implementation

@article{Brandizi2017OrchestratingDD,
  title={Orchestrating differential data access for translational research: a pilot implementation},
  author={Marco Brandizi and Olga Melnichuk and Raffael Bild and Florian Kohlmayer and Bene Rodriguez-Castro and Helmut Spengler and Klaus A. Kuhn and Wolfgang Kuchinke and Christian Ohmann and Timo Mustonen and Mikael Linden and Tommi H. Nyr{\"o}nen and Ilkka Lappalainen and Alvis Brazma and Ugis Sarkans},
  journal={BMC Medical Informatics and Decision Making},
  year={2017},
  volume={17}
}
BackgroundTranslational researchers need robust IT solutions to access a range of data types, varying from public data sets to pseudonymised patient information with restricted access, provided on a case by case basis. The reason for this complication is that managing access policies to sensitive human data must consider issues of data confidentiality, identifiability, extent of consent, and data usage agreements. All these ethical, social and legal aspects must be incorporated into a… 
Between Access and Privacy: Challenges in Sharing Health Data
TLDR
There is no one-size-fitsall solution to privacy while working with biomedical data, and the papers show that there are opportunities for leveraging newly emerging technologies to enable data use while minimizing privacy risks.
TASKA: A modular task management system to support health research studies
TLDR
TASKA, a task/workflow management system that helps to cope with the socio-technical issues arising when dealing with multidisciplinary and multi-setting clinical studies, was shown to simplify the set up of health studies, the management of participants and their roles, as well as the overall governance process.
Data Integration for Future Medicine (DIFUTURE)
TLDR
The infrastructure envisioned by DIFUTURE will provide researchers with cross-site access to data and support physicians by innovative views on integrated data as well as by decision support components for personalized treatments, with a specific focus on data integration and sharing.
Provenance-Enabled Stewardship of Human Data in the GDPR Era
TLDR
A software tool, the Data Information System (DAISY), designed to record data protection relevant provenance of Human Data held and exchanged by research organisations, is described.
An Architectural and Methodological Overview
TLDR
This research presents a meta-analyses of the response of the immune system to various types of antibiotics and its applications in the context of wound care and wound healing.
LabelFlow Framework for Annotating Workflow Provenance
TLDR
This paper investigates whether provenance can be exploited to support reporting and describes LabelFlow, a framework comprised of four Labelling Operators for decorating provenance with domain-specific Labels, a tool that takes as input a workflow, and produces as output a Labelling Pipeline for that workflow, comprised of Labelled Operators.

References

SHOWING 1-10 OF 136 REFERENCES
Technical and Policy Approaches to Balancing Patient Privacy and Data Sharing in Clinical and Translational Research
TLDR
This work recounts a recent privacy-related concern associated with the publication of aggregate statistics from pooled genome-wide association studies that have had a significant impact on the data sharing policies of National Institutes of Health-sponsored databanks.
The eGenVar data management system—cataloguing and sharing sensitive data and metadata for the life sciences
TLDR
This work describes a metadata cataloguing system and a software suite for reporting the presence of data from the life sciences domain and provides a common framework for cataloguing and sharing both public and private data.
A Minimum Data Set for Sharing Biobank Samples, Information, and Data: MIABIS.
TLDR
An updated version of the minimum data set for biobanks and studies using human biospecimens, called MIABIS (Minimum Information About BIobank data Sharing), which consists of 52 attributes describing a biobank's content to facilitate data discovery through harmonization of data elements describing aBiobank at the aggregate level.
Translational research platforms integrating clinical and omics data: a review of publicly available solutions
TLDR
This review discusses the desiderata for optimal translational research platforms, in terms of privacy, interoperability and technical features, and identifies seven platforms: BRISK, caTRIP, cBio Cancer Portal, G-DOC, iCOD, iDASH and tranSMART.
A human rights approach to an international code of conduct for genomic and clinical data sharing
TLDR
This article proposes that an international code of conduct be designed to enable global genomic and clinical data sharing for biomedical research and proposes to position it within a human rights framework.
Legal assessment tool (LAT): an interactive tool to address privacy and data protection issues for data sharing
TLDR
The Legal Assessment Tool (LAT) provides requirements in an interactive way for compliant data access and sharing with appropriate safeguards, restrictions and responsibilities by introducing a culture of responsibility and data governance when dealing with human data.
Knowledge sharing and collaboration in translational research, and the DC-THERA Directory
TLDR
This article presents how the use of metadata and Semantic Web technologies can effectively help to organize the knowledge generated by modern collaborative research, how these technologies can enable effective data management solutions during and beyond the project lifecycle, and how resources such as the DC-THERA Directory fit into the larger context of e-science.
Some experiences and opportunities for big data in translational research
TLDR
This paper argues that the ultimate comparability and consistency of heterogeneous clinical information sources can be enhanced by existing and emerging data standards, which promise to bring order to clinical data chaos.
Architecture of the Open-source Clinical Research Chart from Informatics for Integrating Biology and the Bedside
TLDR
The Informatics for Integrating Biology and the Bedside (i2b2) is a set of software modules called "cells" that have a common messaging protocol that allow them to interact using web services and XML messages, and this architecture is found to be of high value.
Ethical and practical challenges of sharing data from genome-wide association studies: the eMERGE Consortium experience.
TLDR
The challenges of sharing genomic data linked to health information in the electronic medical record (EMR) and issues as they relate to sharing both within a large consortium and in compliance with the National Institutes of Health (NIH) data-sharing policy are discussed.
...
...