What Ethical Issues Does the Precision Medicine Initiative Face?

David Raths | Healthcare Informatics | July 10, 2017

"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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A List of Open Source Tools for College

I've used Linux now for 3 1/2 years, which to me is a substantial period of time. In that time, I have gone from only using LibreOffice to expanding into a purely Linux and open source workflow. I have built my workflow around only using open source software if at all possible, although I am required to use a couple of proprietary tools sparingly. I'd like to share my own philosophy regarding open source. I was first introduced to Linux by my programming teacher; he is a passionate believer in FLOSS and he converted me. I have a passionate belief in the technical superiority of open source tools over proprietary ones because they allow me the freedom to use them however I wish...

How We Brought the Internet to Standing Rock

Last spring a group I follow on Facebook started sharing information about an oil pipeline, called the Dakota Access Pipeline (DAPL), that was planned to go in the ground in North Dakota, and the Water Protectors, teenagers from the Standing Rock Sioux Reservation who were standing up to try to stop that from happening. As I watched the story unfold over the next few months, I knew that I wanted to go out there and see how the nonprofit organization I work for, Geeks Without Bounds, could help...

Healthcare: We Get What We Pay For

Politico (Dan Diamond) had two great pieces last week -- one on how tax-exempt hospitals benefited from the Affordable Care Act (ACA) while cutting charity care, and the second on how the Cleveland Clinic has built an island of prosperity amidst an impoverished community.  I'd like to say I'm surprised, but I'm not.  I wrote about the supposed community benefits of "non-profit" hospitals two years ago, and Politico's analysis suggests things are getting worse. They looked at the top seven hospitals, as ranked by U.S. News & World Report, and found...

New Research Estimates Value of Removing DRM Locks

Cory Doctorow | Electronic Frontier Foundation | July 9, 2017

My co-authors and I at the University of Glasgow are investigating how restrictions on interoperability imposed by Digital Rights Management (DRM) systems might impact the market for goods. We are doing this as part of a larger project to better understand the economics of DRM and to figure out what changes would likely occur if the laws were reformed. Our recent working paper is titled ‘How much do consumers value interoperability: Evidence from the price of DVD players’...

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Documentation Based on User Stories

A typical manual page on a Unix-like system is a good example of feature-based documentation. Ideally, it contains an exhaustive list of all features (options, commands, parameters) of a program, it explains what the features are good for, and it provides examples of how to use them. The measure of quality in the case of this type of documentation is comprehensiveness and thoroughness. On the other hand, a recipe in a cookbook is a classic example of action-oriented documentation that guides the user towards the completion of a specific goal by explaining clear-cut steps...

Research Transparency: 5 Questions about Open Science Answered

Open science is a set of practices designed to make scientific processes and results more transparent and accessible to people outside the research team. It includes making complete research materials, data and lab procedures freely available online to anyone. Many scientists are also proponents of open access, a parallel movement involving making research articles available to read without a subscription or access fee...

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How Fledgling Start-Ups Can Benefit from Accelerator Programmes

Giovanni Rizzo | Medical Plastics News | July 7, 2017

Start-ups in the life science sector are a source of invaluable innovation, entrepreneurial spirit and ultimately, important developments that could improve patient health. It is through new ideas that the sector can face current and future challenges, such as an ageing population, the need to invest in new-generation, digitalised technology, and a rise in patient demand of service and value for money. But data shows that 90% of all start-ups fail within the first year, a worrying statistic considering the wealth of advantages that innovation can bring to the life sciences industry...

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Health Care's Crushing Lack Of Competition

Martin Gaynor, Farzad Mostashari and Paul Ginsburg | Forbes | June 28, 2017

No matter how it resolves, the fiercely partisan debate over repealing and replacing the Affordable Care Act will not solve America’s true health care crisis. Indeed, a key reason why expanding coverage is so hard is that health care services cost so much, making insurance premiums unaffordable to many. Driven by lack of competition, ever higher prices are being paid to hospitals, doctors and insurers without leading to better outcomes. It’s time to implement a competition policy for health care before Americans crumple under a system that is devouring family and government budgets...

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Customer Says eClinicalWorks Holding Patient Data 'Hostage'

Tom Sullivan | Healthcare IT News | July 10, 2017

As eClinicalWorks faces a possible class action lawsuit and the potential for clients to switch to rival EHR vendors, some customers are coming forward with complaints about their treatment. The company countered that it is still signing up new healthcare organizations and at least one user has noticed the vendor changing its ways. At May’s end, the U.S. Department of Justice – in a settlement that included a $155 million fine – mandated that the EHR vendor either upgrade existing customers' software for free or transfer their data to a rival’s electronic health record platform...

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