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"Access to Information - legislation "
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COVID-19 increased censorship circumvention and access to sensitive topics in China
Crisis motivates people to track news closely, and this increased engagement can expose individuals to politically sensitive information unrelated to the initial crisis. We use the case of the COVID-19 outbreak in China to examine how crisis affects information seeking in countries that normally exert significant control over access to media. The crisis spurred censorship circumvention and access to international news and political content on websites blocked in China. Once individuals circumvented censorship, they not only received more information about the crisis itself but also accessed unrelated information that the regime has long censored. Using comparisons to democratic and other authoritarian countries also affected by early outbreaks, the findings suggest that people blocked from accessing information most of the time might disproportionately and collectively access that long-hidden information during a crisis. Evaluations resulting from this access, negative or positive for a government, might draw on both current events and censored history.
Journal Article
Do not publish
Limiting open-access information on rare and endangered species will help to protect them Biologists have long valued publishing detailed information on rare and endangered species. Until relatively recently, much of this information was accessible only through accessing specialized scientific journals in university libraries. However, much of these data have been transferred online with the advent of digital platforms and a rapid push to open-access publication. Information is increasingly also available online in public reports and wildlife atlases, and research published behind paywalls can often be found in the public domain. Increased data and information accessibility has many benefits, such as helping to improve repeatability in scientific studies and enhancing collaboration ( 1 , 2 ). However, such readily accessible information also creates major problems in the context of conserving endangered species.
Journal Article
US policy requires immediate release of records to patients
Patients and clinicians should embrace the opportunitiesOn 5 April a new federal rule will require US healthcare providers to give patients access to all the health information in their electronic medical records without charge.1 This new information sharing rule from the 21st Century Cures Act of 20162 mandates rapid, full access to test results, medication lists, referral information, and clinical notes in electronic formats, on request.The US is not alone in providing patients with full online access to their electronic health records. In Sweden, patients gained access to their records between 2012 and 2018.3 Estonian citizens have had full access since 2005.4 The sharing of personal health information isn’t without precedent in the US: around 55 million people already have access to their online clinical notes,5 and many more have access to laboratory results and other parts of their records. But for some US clinicians, the new rule may feel like a shock.6To patient groups, however, it is the culmination of 25 years of advocacy and relationship building with clinicians, researchers, and policy …
Journal Article
Open access: The true cost of science publishing
Cheap open-access journals raise questions about the value publishers add for their money.
Journal Article
The Physician Payments Sunshine Act — Two Years of the Open Payments Program
Through the Open Payments program (under the Physician Payments Sunshine Act), the Centers for Medicare and Medicaid Services aims to produce more informed consumers, greater understanding of financial relationships in health care, and improved policy development.
The Physician Payments Sunshine Act, part of the Affordable Care Act, requires public reporting of payments made to physicians and teaching hospitals by medical product manufacturers and group purchasing organizations.
1
In the Open Payments program, we at the Centers for Medicare and Medicaid Services (CMS) receive reports from industry on relevant financial interactions and make the information available on a public website. The first round of data, released on September 30, 2014, included financial interactions from August through December 2013. These payments totaled $3.4 billion, from 1347 companies to more than 470,000 physicians and 1019 of the approximately 1200 U.S. . . .
Journal Article
US government reveals big changes to open-access policy
Biden administration instructs all US agencies to require immediate access to federally funded research after it is published, starting in 2026.
Biden administration instructs all US agencies to require immediate access to federally funded research after it is published, starting in 2026.
Journal Article
To tackle social-media harms, mandate data access for researchers
Letter to the Editor
Journal Article
Health Research with Big Data: Time for Systemic Oversight
To address the ethical challenges in big data health research we propose the concept of systemic oversight. This approach is based on six defining features (adaptivity, flexibility, monitoring, responsiveness, reflexivity, and inclusiveness) and aims at creating a common ground across the oversight pipeline of biomedical big data research. Current trends towards enhancing granularity of informed consent and specifying legal provisions to address informational privacy and discrimination concerns in data-driven health research are laudable. However, these solutions alone cannot have the desired impact unless oversight activities by different stakeholders acquire a common substantive orientation.
Journal Article