Weekly Roundup – 12/6/14: Overcoming paywalls, increasing information accessibility in the pursuit of a healthier planet
Some of the biggest news in health care this week concerned the dissemination of health care news.
Stated more clearly, there’s been a good bit of discussion – including a commentary by Alexa Chamay Berrier, journal development editor at BioMed Central in London, on Global Health NOW – about accessibility of information; specifically, the timely sharing of research on such topics as Ebola.
I Open Access succinctly spells out the issue:
“For scientists and medical researchers in lower-income countries, lack of access to research in costly subscription-based journals is a major impediment to their work. … Open Access allows authors to disseminate their research for free around the world whilst maintaining the copyright to reproduce their work. This enables the flow of cutting-edge research to transcend both pay and national boundaries as life-saving research and flow of knowledge can be shared freely allowing the knowledge pool to develop faster than ever.”
BioMed Central and SpringerOpen are collaborating on I Open Access, which allows authors to retain the copyright to their work through a Creative Commons attribution license. Otherwise, their research is free to read, copy and distribute.
Meanwhile, the publisher of Nature and 48 other scientific journals has come up with an alternative to “dark sharing,” the practice through which scientists share papers that are usually hidden behind paywalls. They circumvent the system by downloading a PDF of a document and sharing it by other means.
“Dark sharing” is, quite clearly, a less-than-perfect way to relay news of scientific advancements, not to mention the fact that it deprives publishers of accurate browsing statistics. So Nature Publishing Group (NPG) announced a one-year pilot initiative where subscribers can share a link, via email or social media, to a read-only version of any paper. Also, a select group of 100 news outlets and science blogs can include in their stories a link to a read-only version of any NPG paper.
Timo Hannay, a former neuroscientist who is now managing director of Digital Science, came up with the idea in an effort to help scientists avoid “using clumsy, time-consuming practices” and “enable collaboration.”
Other subscription journals and global health firms are experimenting with similar sharing systems.
Change is needed. An international team of experts, in an analysis published in BMC Public Health and funded by the Bill and Melinda Gates Foundation and the National Institutes of Health, concluded that “barriers to the sharing of public health data hamper decision-making efforts on local, national and global levels, and stymie attempts to contain emerging global health threats.”
They identified 65 relevant articles, found 20 “real or perceived barriers to data sharing in public health and classified them into six categories: technical, motivational, economic, political, legal and ethical.”
The team proposes the creation of a treaty for worldwide data sharing in public health.
“Identifying and classifying these barriers was the first step toward harnessing the potential of data for a new era in population health,” said lead author Dr. Willem van Panhuis. “As our knowledge of these barriers increases, so will the opportunities for solutions.”
Those of us who assumed the Internet had moved us past such impediments to the flow of information, were wrong. In fact, the Internet itself has become part of the accessibility debate, through “net neutrality.”
In the U.S., the Federal Communications Commission is expected to rule soon on whether cable and phone companies should be allowed to charge fees to some content providers, in exchange for faster transmission speeds.
That would be a problem in health care, some argue, because it would increase the costs of online doctor “visits” – which are growing in popularity and will soon represent 10 percent of all doctor visits in the U.S. – and electronic record data exchange. “I don’t think people realize how much net neutrality can affect health services,” Mark Gaynor, an associate professor of health management and policy at St. Louis University, told Modern Healthcare.
Others argue that net neutrality is essential to startup innovation in health care.
And neutrality is already an issue in the developing world, where Google and Facebook have struck deals with a growing number of carriers, essentially keeping competitors out of the game.
Susan Crawford, visiting professor of law at Harvard University and a co-director of Harvard’s Berkman Center for Internet & Society, told MIT Technology Review that it’s “a big concern” that Google and Facebook are becoming dominant in many emerging economies: “For poorer people, Internet access will equal Facebook. That’s not the Internet – that’s being fodder for someone else’s ad-targeting business,” she says. “That’s entrenching and amplifying existing inequalities and contributing to poverty of imagination – a crucial limitation on human life.”
These cloud-based debates and turf battles might appear to be thousands of feet above the on-the-ground realities of delivering the most basic medical care to low-income populations. But one only look at the ongoing clash between banks and telecom companies over mobile money as explored this week on NextBillion Financial Innovation, to realize that access to information equals access to just about everything else.