An “open-source” approach to accelerating human health advances is the common theme among a diverse group of medical science projects that have won six science awards honoring “excellence in participant-centered research” - a rapidly emerging field that aims to turn patients and healthy people into more active and more data-sharing participants in medical research. The awards will be given out at Harvard Medical School in Boston on April 25 at a scientific convening called GET Conference (“GET” stands for “Genomes, Environments, Traits”). “The winners of the GETy Awards are at the forefront of a research revolution that will radically accelerate the rate of human health advances,” says Jason Bobe, organizer of the GET Conference, and Executive Director of the nonprofit PersonalGenomes.org.
John Wilbanks
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GETy Awards Celebrate Unorthodox Open-Source Approaches to Accelerating Human Health Advances
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Guest Article: Shakespeare in Namespace, or why Blue Button took off as fast as it did
While Veterans Affairs was struggling with the nuances of the implementation of the Blue Button personal health record, and while the VA and the Pentagon are wrestling the Health Data Dictionary to the ground, we lived – and lived through – the hell of multiple rigid conventions described in [David] Weinberger’s book [Too Big to Know]. Read More »
Health Data Should Belong to Patients, Topol Argues
The digital revolution’s merging of medicine with high tech has unleashed massive amounts of data about the most intimate details of our life — what we ate, how far we walked, how fast our heart beat. As a result, what constitutes health data is no longer so easily defined. Neither is how the information is used. With rise of machine learning, those questions are becoming increasingly urgent, especially with the move of high tech companies into the clinical sphere, according to health data transparency advocate Dr. Eric Topol...
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John Wilbanks to Keynote OpenClinica 2015 Conference (OC15)
Noted advocate of open access in clinical research and Chief Commons Officer at Sage Bionetworks, John Wilbanks, will deliver the keynote presentation at the 2015 OpenClinica Global Conference (OC15), to be held May 31 - June 1 in Amsterdam. OpenClinica is the largest open source community in the clinical research field, and OC15 will bring together both clinical research and IT professionals to share cutting-edge information and ideas around how open source is being used to transform the clinical research landscape.
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Leader in Clinical Research Tech Reacts to Apple's #ResearchKit
Apple, Inc. has a remarkable ability to capture the world’s attention when announcing “the next big thing.” They have honed their well-known Reality Distortion Field skills for over 30 years...ResearchKit has grabbed such attention. Maybe not as much as The Watch, but amongst the minority of us who pay attention to such things. And the reactions have been typically polarized—it’s either an “ethics quagmire” or “Apple fixing the world.” But reality rarely presents an either-or proposition...
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Open Access Meeting Reflections—SPARC 2012
Ten years after the movement was launched through the Budapest Open Access Initiative, open access (OA) is thriving, flourishing, and becoming a core element in the broader “Open Knowledge” movement that includes Open Educational Resources (OER), Free and Open Source Software (FOSS), Open Data, and Open Science among others, all of which share the common goals of providing free, unrestricted access to different types of information and knowledge. Read More »
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Sage Bionetworks Advocates for Open Systems in Health Research
Sage Bionetworks, a nonprofit biomedical research organization, continues its work to redefine the way in which health data is gathered, shared and used through the use of open systems, incentives and norms. In a Nature commentary published today, a set of governing principles for digital health data analysis that are designed to maximize the contribution of large-scale digital data to advancing medical care are described. This commentary was co-authored by John Wilbanks, Chief Commons Officer at Sage Bionetworks and Eric Topol, MD, Director of the Scripps Translational Science Institute, and Chief Academic Officer of Scripps Health. The two work together on the NIH-funded Precision Medicine Initiative that was announced earlier this month.
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Sage Bionetworks to Share Results of Mobile Health Research Study at Upcoming Precision Medicine Conference
In the midst of several colliding perspectives on personal data sharing from both patients and researchers, it is challenging to comprehend how clinical study designs should be conducted to benefit both stakeholders. Sage Bionetworks recently began sharing data from over 9,000 participants of mPower, a mobile health research study for Parkinson's Disease. As one of the first observational assessments of human health to achieve this scale, its success is attributed to the unique study design which emphasizes transparency and trust between participants and researchers...
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Thomson Reuters Tackles Open Access Datasets With Data Citation Index
This month, Thomson Reuters began a soft launch of its new Data Citation Index, which is intended as “a comprehensive view of scholarly research bringing research data into the same arena as the published literature it supports. Read More »
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What Ethical Issues Does the Precision Medicine Initiative Face?
"This is the largest government study ever on its own people.” Nancy Kass, Sc.D., a professor of bioethics and public health at the Johns Hopkins Bloomberg School of Public Health in Baltimore, was talking about the Precision Medicine Initiative, now called the All of Us Research Program. Kass says she makes that bold statement deliberately and with humility, because she chairs the institutional review board (IRB) for the project, which aims to create a million-person cohort...
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ONC's 2nd Interoperability Forum
The Office of the National Coordinator for Health IT (ONC) is hosting the 2nd Interoperability Forum on August 6th- 8th, 2018 in Washington, DC. This event will bring people together from ONC, our federal partners, the healthcare industry, and the technology sector to: Learn about recent efforts to advance interoperability nationwide; Identify concrete actions in response to current interoperability barriers
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