New WHO policy requires sharing of all research data

Curated on Posted on by Stefaan Verhulst

Press release: “Science and public health can benefit tremendously from sharing and reuse of health data. Sharing data allows us to have the fullest possible understanding of health challenges, to develop new solutions, and to make decisions using the best available evidence.

The Research for Health department has helped spearhead the launch of a new policy from the Science Division which covers all research undertaken by or with support from WHO. The goal is to make sure that all research data is shared equitably, ethically and efficiently. Through this policy, WHO indicates its commitment to transparency in order to reach the goal of one billion more people enjoying better health and well-being.

The WHO policy is accompanied by practical guidance to enable researchers to develop and implement a data management and sharing plan, before the research has even started. The guide provides advice on the technical, ethical and legal considerations to ensure that data, even patient data, can be shared for secondary analysis without compromising personal privacy.  Data sharing is now a requirement for research funding awarded by WHO and TDR. 

“We have seen the problems caused by the lack of data sharing on COVID-19,” said Dr. Soumya Swaminathan, WHO Chief Scientist. “When data related to research activities are shared ethically, equitably and efficiently, there are major gains for science and public health.”

The policy to share data from all research funded or conducted by WHO, and practical guidance to do so, can be found here…(More)”.

The New ADP National Employment Report

Curated on Posted on by Stefaan Verhulst

Press Release: “The new ADP National Employment Report (NER) launched today in collaboration with the Stanford Digital Economy Lab. Earlier this spring, the ADP Research Institute paused the NER in order to refine the methodology and design of the report. Part of that evolution was teaming up data scientists at the Stanford Digital Economy Lab to add a new perspective and rigor to the report. The new report uses fine-grained, high-frequency data on jobs and wages to deliver a richer and more useful analysis of the labor market.

Let’s take a look at some of the key changes with the new NER, along with the new ADP® Pay Insights Report.

It’s independent. The key change is that the new ADP NER is an independent measure of the US labor market, rather than a forecast of the BLS monthly jobs number. Jobs report and pay insights are based on anonymized and aggregated payroll data from more than 25 million US employees across 500,000 companies. The new report focuses solely on ADP’s clients and private-sector change…(More)”.

OSTP Issues Guidance to Make Federally Funded Research Freely Available Without Delay

Curated on Posted on by Stefaan Verhulst

The White House: “Today, the White House Office of Science and Technology Policy (OSTP) updated U.S. policy guidance to make the results of taxpayer-supported research immediately available to the American public at no cost. In a memorandum to federal departments and agencies, Dr. Alondra Nelson, the head of OSTP, delivered guidance for agencies to update their public access policies as soon as possible to make publications and research funded by taxpayers publicly accessible, without an embargo or cost. All agencies will fully implement updated policies, including ending the optional 12-month embargo, no later than December 31, 2025.

This policy will likely yield significant benefits on a number of key priorities for the American people, from environmental justice to cancer breakthroughs, and from game-changing clean energy technologies to protecting civil liberties in an automated world.

For years, President Biden has been committed to delivering policy based on the best available science, and to working to ensure the American people have access to the findings of that research. “Right now, you work for years to come up with a significant breakthrough, and if you do, you get to publish a paper in one of the top journals,” said then-Vice President Biden in remarks to the American Association for Cancer Research in 2016. “For anyone to get access to that publication, they have to pay hundreds, or even thousands, of dollars to subscribe to a single journal. And here’s the kicker — the journal owns the data for a year. The taxpayers fund $5 billion a year in cancer research every year, but once it’s published, nearly all of that taxpayer-funded research sits behind walls. Tell me how this is moving the process along more rapidly.” The new public access guidance was developed with the input of multiple federal agencies over the course of this year, to enable progress on a number of Biden-Harris Administration priorities.

“When research is widely available to other researchers and the public, it can save lives, provide policymakers with the tools to make critical decisions, and drive more equitable outcomes across every sector of society,” said Dr. Alondra Nelson, head of OSTP. “The American people fund tens of billions of dollars of cutting-edge research annually. There should be no delay or barrier between the American public and the returns on their investments in research.”..(More)“.

Who Is Falling for Fake News?

Curated on Posted on by Stefaan Verhulst

Article by Angie Basiouny: “People who read fake news online aren’t doomed to fall into a deep echo chamber where the only sound they hear is their own ideology, according to a revealing new study from Wharton.

Surprisingly, readers who regularly browse fake news stories served up by social media algorithms are more likely to diversify their news diet by seeking out mainstream sources. These well-rounded news junkies make up more than 97% of online readers, compared with the scant 2.8% who consume online fake news exclusively.

“We find that these echo chambers that people worry about are very shallow. This idea that the internet is creating an echo chamber is just not holding out to be true,” said Senthil Veeraraghavan, a Wharton professor of operations, information and decisions.

Veeraraghavan is co-author of the paper, “Does Fake News Create Echo Chambers?” It was also written by Ken Moon, Wharton professor of operations, information and decisions, and Jiding Zhang, an assistant operations management professor at New York University Shanghai who earned her doctorate at Wharton.

The study, which examined the browsing activity of nearly 31,000 households during 2017, offers empirical evidence that goes against popular beliefs about echo chambers. While echo chambers certainly are dark and dangerous places, they aren’t metaphorical black holes that suck in every person who reads an article about, say, Obama birtherism theory or conspiracies about COVID-19 vaccines. The study found that households exposed to fake news actually increase their exposure to mainstream news by 9.1%.

“We were surprised, although we were very aware going in that there was much that we did not know,” Moon said. “One thing we wanted to see is how much fake news is out there. How do we figure out what’s fake and what’s not, and who is producing the fake news and why? The economic structure of that matters from a business perspective.”…(More)”

EU digital diplomacy: Council agrees a more concerted European approach to the challenges posed by new digital technologies

Curated on Posted on by Stefaan Verhulst

Press Release: “The Council today approved conclusions on EU digital diplomacy.

Digital technologies have brought new opportunities and risks into the lives of EU citizens and people around the globe. They have also become key competitive parameters that can shift the geopolitical balance of power. The EU has a growing web of digital alliances and partnerships around the world. It is increasingly investing in digital infrastructure and, under the Global Gateway strategy, in supporting partners in defining their regulatory approach to technology based on a human-centric approach.

Against this background, the Council invites all relevant parties to ensure that digital diplomacy becomes a core component and an integral part of the EU external action, and is closely coordinated with other EU external policies on cyber and countering hybrid threats, including foreign information manipulation and interference.

In this context, to enhance the EU’s Digital Diplomacy in and with the US, the EU will soon open a dedicated office in San Francisco, a global centre for digital technology and innovation.

The conclusions stress the importance of capacity building and the strategic promotion of technological solutions and regulatory frameworks that respect democratic values and human rights.

For this reason, the EU will actively promote universal human rights and fundamental freedoms, the rule of law and democratic principles in the digital space and advance a human-centric approach to digital technologies in relevant multilateral fora and other platforms, promoting partnerships and coalitions with like-minded countries and strengthening cooperation in and with the UN system, the G7, the OSCE, the OECD, the WTO, NATO, the Council of Europe and other multilateral fora, striving to match the progress achieved with the EU’s Green Diplomacy and Cyber Diplomacy…(More)”

First regulatory sandbox on Artificial Intelligence presented

Curated on Posted on by Stefaan Verhulst

European Commission: “The sandbox aims to bring competent authorities close to companies that develop AI to define best practices that will guide the implementation of the future European Commission’s AI Regulation (Artificial Intelligence Act). This would also ensure that the legistlation can be implemented in two years.

The regulatory sandbox is a way to connect innovators and regulators and provide a controlled environment for them to cooperate. Such a collaboration between regulators and innovators should facilitates the development, testing and validation of innovative AI systems with a view to ensuring compliance with the requirements of the AI Regulation.

While the entire ecosystem is preparing for the AI Act, this sandbox initiative is expected to generate easy-to-follow, future-proof best practice guidelines and other supporting materials. Such outputs are expected to facilitate the implementation of rules by companies, in particular SMEs and start-ups. 

This sandbox pilot initiated by the Spanish government will look at operationalising the requirements of the future AI regulation as well as other features such as conformity assessments or post-market activities.

Thanks to this pilot experience, obligations and how to implement them will be documented, for AI system providers (participants of the sandbox) and systematised in a good practice and lessons learnt implementation guidelines. The deliverables will also include methods to control and follow up that are useful for supervising national authorities in charge of implementing the supervisory mechanisms that the regulation stablishes.

In order to strengthen the cooperation of all possible actors at the European level, this exercise will remain open to other Member States that will be able to follow or join the pilot in what could potentially become a pan-European AI regulatory sandbox. Cooperation at EU level with other Member States will be pursued within the framework of the Expert Group on AI and Digitalisation of Businesses set up by the Commission.

The financing of this sandbox is drawn from the Recovery and Resilience Funds assigned to the Spanish Government, through the Spanish Recovery, Transformation and Resilience Plan, and in particular through the Spanish National AI Strategy (Component 16 of the Plan). The overall budget for the pilot will be approximately 4.3M EUR for approximately three years…(More)”.

Canada is the first country to provide census data on transgender and non-binary people

Curated on Posted on by Stefaan Verhulst

StatsCan: “Prior to the 2021 Census, some individuals indicated that they were not able to see themselves in the two responses of male or female on the existing sex question in the census.

Following extensive consultation and countrywide engagement with the Canadian population, the census evolved—as it has for more than a century—to reflect societal changes, adding new content on gender in 2021.

Beginning in 2021, the precision of “at birth” was added to the sex question on the census questionnaire, and a new question on gender was included. As a result, the historical continuity of information on sex was maintained while allowing all cisgender, transgender and non-binary individuals to report their gender. This addressed an important information gap on gender diversity (see Filling the gaps: Information on gender in the 2021 Census and 2021 Census: Sex at birth and gender—the whole picture).

For many people, their gender corresponds to their sex at birth (cisgender men and cisgender women). For some, these do not align (transgender men and transgender women) or their gender is not exclusively “man” or “woman” (non-binary people).

The strength of the census is to provide reliable data for local communities throughout the country and for smaller populations such as the transgender and non-binary populations. Statistics Canada always protects privacy and confidentiality of respondents when disseminating detailed data.

These modifications reflect today’s reality in terms of the evolving acceptance and understanding of gender and sexual diversity and an emerging social and legislative recognition of transgender, non-binary and LGBTQ2+ people in general, that is, people who are lesbian, gay, bisexual, transgender, queer, Two-Spirit, or who use other terms related to gender or sexual diversity. In 2017, the Canadian government amended the Canadian Human Rights Act and the Canadian Criminal Code to protect individuals from discrimination and hate crimes based on gender identity and expression.

These data can be used by public decision makers, employers, and providers of health care, education, justice, and other services to better meet the needs of all men and women—including transgender men and women—and non-binary people in their communities….(More)”.

A Consumer Price Index for the 21st Century

Curated on Posted on by Stefaan Verhulst

Press Release by the National Academies of Sciences, Engineering, and Medicine: “The Bureau of Labor Statistics (BLS) should undertake a new strategy to modernize the Consumer Price Index by accelerating its use of new data sources and developing price indexes based on different income levels, says a new report from the National Academies of Sciences, Engineering, and Medicine.

The Consumer Price Index is the most widely used measure of inflation in the U.S. It is used to determine cost-of-living allowances and, importantly, influences monetary policy, among many other private- and public-sector applications. The new report, Modernizing the Consumer Price Index for the 21st Century, says the index has traditionally relied on field-generated data, such as prices observed in person at grocery stores or major retailers. These data have become more challenging and expensive to collect, and the availability of vast digital sources of consumer price data presents an opportunity. BLS has begun tapping into these data and has said its objective is to switch a significant portion of its measurement to nontraditional and digital data sources by 2024.

“The enormous economic disruption of the COVID-19 pandemic presents a perfect case study for the need to rapidly employ new data sources for the Consumer Price Index,” said Daniel E. Sichel, professor of economics at Wellesley College, and chair of the committee that wrote the report. “Modernizing the Consumer Price Index can help our measurement of household costs and inflation be more accurate, timelier, and ultimately more useful for policymakers responding to rapidly changing economic conditions.”..
The report says BLS should embark on a strategy of accelerating and enhancing the use of scanner, web-scraped, and digital data directly from retailers in compiling the Consumer Price Index. Scanner data — recorded at the point of sale or by consumers in their homes — can expand the variety of products represented in the Consumer Price Index, and better detect shifts in buying patterns. Web-scraped data can more nimbly track the prices of online goods, and goods where one company dominates the market. Permanently automating web-scraping of price data should be a high priority for the Consumer Price Index program, especially for food, electronics, and apparel, the report says.

Embracing these alternative data sources now will ensure that the accuracy and timeliness of the Consumer Price Index will not be compromised in the future, the report adds. Moreover, accelerating this process will give BLS time to carefully assess new data sources and methodologies before taking the decision to incorporate them in the official index….(More)”

European Health Union: A European Health Data Space for people and science

Curated on Posted on by Stefaan Verhulst

Press Release: “Today, the European Commission launched the European Health Data Space (EHDS), one of the central building blocks of a strong European Health Union. The EHDS will help the EU to achieve a quantum leap forward in the way healthcare is provided to people across Europe. It will empower people to control and utilise their health data in their home country or in other Member States. It fosters a genuine single market for digital health services and products. And it offers a consistent, trustworthy and efficient framework to use health data for research, innovation, policy-making and regulatory activities, while ensuring full compliance with the EU’s high data protection standards…

Putting people in control of their own health data, in their country and cross-border

  • Thanks to the EHDS, people will have immediate, and easy access to the data in electronic form, free of charge. They can easily share these data with other health professionals in and across Member States to improve health care delivery. Citizens will be in full control of their data and will be able to add information, rectify wrong data, restrict access to others and obtain information on how their data are used and for which purpose.
  • Member States will ensure that patient summaries, ePrescriptions, images and image reports, laboratory results, discharge reports are issued and accepted in a common European format.
  • Interoperability and security will become mandatory requirements. Manufacturers of electronic health record systems will need to certify compliance with these standards.
  • To ensure that citizens’ rights are safeguarded, all Member States have to appoint digital health authorities. These authorities will participate in the cross-border digital infrastructure (MyHealth@EU) that will support patients to share their data across borders.

Improving the use of health data for research, innovation and policymaking

  • The EHDS creates a strong legal framework for the use of health data for research, innovation, public health, policy-making and regulatory purposes. Under strict conditions, researchers, innovators, public institutions or industry will have access to large amounts of high-quality health data, crucial to develop life-saving treatments, vaccines or medical devices and ensuring better access to healthcare and more resilient health systems.  
  • The access to such data by researchers, companies or institutions will require a permit from a health data access body, to be set up in all Member States. Access will only be granted if the requested data is used for specific purposes, in closed, secure environments and without revealing the identity of the individual. It is also strictly prohibited to use the data for decisions, which are detrimental to citizens such as designing harmful products or services or increasing an insurance premium.
  • The health data access bodies will be connected to the new decentralised EU-infrastructure for secondary use (HealthData@EU) which will be set up to support cross-border projects…(More)”

The European Data Protection Supervisor (EDPS) launches pilot phase of two social media platforms

Curated on Posted on by Stefaan Verhulst

Press Release: “The European Data Protection Supervisor (EDPS) launches today the public pilot phase of two social media platforms: EU Voice and EU Video.

EU institutions, bodies, offices and agencies (EUIs) participating in the pilot phase of these platforms will be able to interact with the public by sharing short texts, images and videos on EU Voice; and by sharing, uploading, commenting videos and podcasts on EU Video.

The two platforms are part of decentralised, free and open-source social media networks that connect users in a privacy-oriented environment, based on Mastodon and PeerTube software. By launching the pilot phase of EU Voice and EU Video, the EDPS aims to contribute to the European Union’s strategy for data and digital sovereignty to foster Europe’s independence in the digital world.

Wojciech Wiewiórowski, EDPS, said: “With the pilot launch of EU Voice and EU Video, we aim to offer alternative social media platforms that prioritise individuals and their rights to privacy and data protection. In concrete terms this means, for example, that EU Voice and EU Video do not rely on transfers of personal data to countries outside the European Union and the European Economic Area; there are no advertisements on the platforms; and there is no profiling of individuals that may use the platforms. These measures, amongst others, give individuals the choice on and control over how their personal data is used.”

The EDPS and the European Commission’s Directorate General for Informatics (DIGIT) have collaborated closely throughout the development of EU Voice and EU Video. In line with the goals of the Commission’s Open Source Software Strategy 2020 – 2023, DIGIT’s technical assistance to the EDPS proves the importance of inter-institutional cooperation on open source as an enabler of privacy rights and data protection, therefore contributing to the EU’s technological sovereignty.

The launch of the pilot phase of EU Voice and EU Video will help the EDPS to test the platforms in practice by collecting feedback from participating EUIs. The EDPS hopes that this first step will mark a continuity in the use of privacy-compliant social media platforms…(More)”.