The Annals of Internal Medicine heralds a historic moment in the emerging era of open science as it features 2 systematic reviews on rhBMP-2 that are based on patient-level data from all clinical trials conducted by Medtronic, which were shared through the Yale University Open Data Access (YODA) Project.
A NY Times article discusses the issues with opening up clinical trials data. More researchers are insisting on seeing all the data behind all clinical trials for drugs, not just the rosy reports that companies choose to release.
There’s no shortage of great minds using big data techniques to improve the quality of our medical treatments, but sometimes they can’t get access to the data they need most. Improving access to genetic data, for example, might just help cure cancer.
“The health care industry might have embraced the big data movement with open arms, but embracing it with open data probably would be more effective. Hospital organizations, researchers and the tech companies serving them have lots of great ideas — and have achieved some great results, too — but, ultimately, efforts to use big data to transform the industry will only be as good as the data these stakeholders have to work with. “
Shannon Bohle provides an excellent overview of the value of open data and evaluates new and suggested open data tools when it comes to making the most of the open access and open data.
“From a business perspective, the management of open data in the health sciences, for example, holds both the potential to reduce losses and increase profits. Preserving, storing, and retrieving data in a manageable fashion, then, will affect not only data consumers but also data producers.
” In medicine, several online tools allow patients to better manage their health care through a Personal Health Record (PHR) including: Microsoft HealthVault,PatientsLikeMe, getHealtZ, onpatient, WebMD Health Record, and Patient Ally. Other tools include EM data analysis and visualization of the brain like NeuroTrace. CARMEN (Code, Analysis, Repository and Modeling for e-Neuroscience) in the UK is a virtual neurophysiology laboratory. Amira was designed for data analysis and visualization in the life sciences along with MeVisLab for medical image processing and visualization.ClinicalTrials.gov Protocol Data Element Definitions and Infobuttons are useful when working with data in the health sciences. Standard tools include PubMed, PubMed Central, MedlinePlus, and GenBank.”
Each day, patients and their physicians make treatment decisions with access to only a fraction of the relevant clinical research data. Many clinical studies, including randomized clinical trials, are never published in the biomedical literature. The Yale University Open Data Access project is set to change this. They have developed a model to facilitate access to patient-level clinical research data to promote wider availability of clinical trial data and independent analysis by external investigators.
Medtronic, Inc. provided a grant to Yale University to apply the YODA Project model in practice for the first time. Yale led independent, systematic reviews of the entire body of scientific evidence regarding the safety and effectiveness of Medtronic’s recombinant bone morphogenetic protein-2 (rhBMP-2) product.
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