Stefaan Verhulst

Paper by Redeemer Dornudo Yao Krah and Gerard Mertens: “The study is a systematic literature review that assembles scientific knowledge in local government transparency in the twenty-first Century. The study finds a remarkable growth in research on local government transparency in the first nineteen years, particularly in Europe and North America. Social, economic, political, and institutional factors are found to account for this trend. In vogue among local governments is the use of information technology to enhance transparency. The pressure to become transparent largely comes from the passage of Freedom of Information Laws and open data initiatives of governments….(More)”.

Paper by Heike Schweitzer and Robert Welker: “The paper strives to systematise the debate on access to data from a competition policy angle. At the outset, two general policy approaches to access to data are distinguished: a “private control of data” approach versus an “open access” approach. We argue that, when it comes to private sector data, the “private control of data” approach is preferable. According to this approach, the “whether” and “how” of data access should generally be left to the market. However, public intervention can be justified by significant market failures. We discuss the presence of such market failures and the policy responses, including, in particular, competition policy responses, with a view to three different data access scenarios: access to data by co-generators of usage data (Scenario 1); requests for access to bundled or aggregated usage data by third parties vis-à-vis a service or product provider who controls such datasets, with the goal to enter complementary markets (Scenario 2); requests by firms to access the large usage data troves of the Big Tech online platforms for innovative purposes (Scenario 3). On this basis we develop recommendations for data access policies….(More)”.

Paper by Chris Culnane, Benjamin I. P. Rubinstein, and David Watts: “Adopted by government agencies in Australia, New Zealand, and the UK as policy instrument or as embodied into legislation, the ‘Five Safes’ framework aims to manage risks of releasing data derived from personal information. Despite its popularity, the Five Safes has undergone little legal or technical critical analysis. We argue that the Fives Safes is fundamentally flawed: from being disconnected from existing legal protections and appropriation of notions of safety without providing any means to prefer strong technical measures, to viewing disclosure risk as static through time and not requiring repeat assessment. The Five Safes provides little confidence that resulting data sharing is performed using ‘safety’ best practice or for purposes in service of public interest….(More)”.

Sara Frueh at the National Academies: “While video games often give us a way to explore other worlds, they can also help us learn more about our own — including how to navigate a pandemic. That was the premise underlying “Jamming the Curve,” a competition that enlisted over 400 independent video game developers around the world to develop concepts for games that reflect the real-world dynamics of COVID-19.

“Games can help connect our individual actions to larger-scale impact … and help translate data into engaging stories,” said Rick Thomas, associate program officer of LabX, a program of the National Academy of Sciences that supports creative approaches to public engagement.

Working with partners IndieCade and Georgia Tech, LabX brought Jamming the Curve to life over two weeks in September.

The “game jam” generated over 50 game concepts that drop players into a wide array of roles — from a subway rider trying to minimize the spread of infection among passengers, to a grocery store cashier trying to help customers while avoiding COVID-19, to a fox ninja tasked with dispensing masks to other forest creatures.

The five winning game concepts (see below) were announced at an award ceremony in late October, where each winning team was given a $1,000 prize and the chance to compete for a $20,000 grant to develop their game further.

The power of games

“Sometimes public health concepts can be a little dry,” said Carla Alvarado, a public health expert and program officer at the National Academies who served as a judge for the competition, during the awards ceremony. “Games package that information — it’s bite-sized, it’s digestible, and it’s palatable.”

And because games engage the senses and involve movement, they help people remember what they learn, she said. “That type of learning — experiential learning — helps retain a lot of the concepts.”

The idea of doing a game jam around COVID-19 began when Janet Murray of Georgia Tech reached out to Stephanie Barish and her colleagues at IndieCade about games’ potential to help express the complicated data around the disease. “Not everybody really knows how to look at that all of that information, and games are so wonderful at reaching people in ways that people understand,” Barish said.

Rick Thomas and the LabX team heard about the idea for Jamming the Curve and saw how they could contribute. The program had experience organizing other game projects around role-playing and storytelling — along with access to a range of scientists and public health experts through the National Academies’ networks.

“Given the high stakes of the topic around COVID-19 and the amount of misinformation around the pandemic, we really needed to make sure that we were doing this right when it came to creating these games,” said Thomas. LabX helped to recruit public health professionals involved in the COVID-19 response, as well as experts in science communication and risk perception, to serve as mentors to the game developers.

Play the Winning Games!

Trailers and some playable prototypes for the five winning game concepts can be found online:

• Everyday Hero, in which players work to stop the spread of COVID-19 through measures such as social distancing and mask use
• PandeManager, which gives players the job of a town’s mayor who must slow the spread of disease among citizens
• Lab Hero, in which users play a first responder who is working hard to find a vaccine while following proper health protocols
• Cat Colony Crisis, in which a ship of space-faring cats must deal with a mysterious disease outbreak
• Outbreak in Space, which challenges players to save friends and family from a spreading epidemic in an alien world

All of the games submitted to Jamming the Curve can be found at itch.io.

The games needed to be fun as well as scientifically accurate — and so IndieCade, Georgia Tech, and Seattle Indies recruited gaming experts who could advise participants on how to make their creations engaging and easy to understand….(More)“.

A report by SDSN TReNDS and DataReady Limited on behalf of Contracts4DataCollaboration: “Building upon issues discussed in the C4DC report, “Laying the Foundation for Effective Partnerships: An Examination of Data Sharing Agreements,” this brief examines the potential of sunset clauses or sunset provisions to be a legally binding, enforceable, and accountable way of ensuring COVID-19 related data sharing agreements are wound down responsibly at the end of the pandemic. The brief is divided into four substantive parts: Part I introduces sunset clauses as legislative tools, highlighting a number of examples of how they have been used in both COVID-19 related and other contexts; Part II discusses sunset provisions in the context of data sharing agreements and attempts to explain the complex interrelationship between data ownership, intellectual property, and sunset provisions; Part III identifies some key issues policymakers should consider when assessing the utility and viability of sunset provisions within their data sharing agreements and arrangements; and Part IV highlights the value of a memorandum of understanding (MoU) as a viable vehicle for sunset provisions in contexts where data sharing agreements are either non-existent or not regularly used….(More)“.(Contracts 4 Data Collaboration Framework).

 Phil Klay at the New York Times: “…Stories are a quintessentially human method of responding to the chaos and uncertainty of the world. Science is a quintessentially human method of trying to control that chaos, and data is its raw material. Adrift in the world, uncertain of the future, hostage to fate, but possessed of increasingly powerful tools for carving up pieces of the world and putting them under the microscope, is it any wonder that we increasingly turn to science when looking for deliverance from our human predicaments?

Science, after all, will eventually bring us to the end of the pandemic, just as it has helped limit the damage through better treatments and proof of the benefits of wearing masks. “Science over fiction,” was one slogan of the Joe Biden campaign, a welcome message to those who’d like public policy tethered more to reality than political fantasy.

But because science supposedly gives clear answers about everything from how to open schools in a pandemic to who will be elected president, we tend to rush to embrace it as a panacea. Some, like the popular podcaster and author Sam Harris, even think science can answer moral questions. Rarely does it occur to us how often the invocation of “science” is used to mask value judgments, or political deliberation.

When the Centers for Disease Control and Prevention and the American Academy of Pediatricians released separate guidelines for reopening schools, the difference lay not in the underlying science but in their institutional priorities, one focused on disease spread and the other on the welfare of children. Likewise, the difference in how New York City handled the reopenings of day cares and schools reflected not simply science, but also what could be more easily demanded of workers who lacked the protection of a powerful union.

As much as we’d like to believe in “science over fiction,” decisions in the real world require negotiating between what we think the data means, what human value we’d like to assign to it and what stories about it we can get others to accept. Data alone is not knowledge, and it is certainly not wisdom. It rarely says as much as we think it does.

Yet its allure is undeniable, persistent. As I watched the election returns on Tuesday and Wednesday, I did so with the sinking feeling that I’d been fooled again by the lure of data. Even though it looked like Biden could still win, it was clear that those hard numbers I’d been absorbing for weeks, based on fine -tuned methodologies, correcting for past mistakes, aggregated to minimize chances of error, hadn’t come close to reflecting reality. “You are literally working on an essay about the problems with relying too much on data,” my wife told me the morning after the election, “and yet you were so confident in the polls.”…(More)”

NIH Blogpost by Carrie Wolinetz: “Today, nearly twenty years after the publication of the Final NIH Statement on Sharing Research Data in 2003, we have released a Final NIH Policy for Data Management and Sharing. This represents the agency’s continued commitment to share and make broadly available the results of publicly funded biomedical research. We hope it will be a critical step in moving towards a culture change, in which data management and sharing is seen as integral to the conduct of research. Responsible data management and sharing is good for science; it maximizes availability of data to the best and brightest minds, underlies reproducibility, honors the participation of human participants by ensuring their data is both protected and fully utilized, and provides an element of transparency to ensure public trust and accountability.

This policy has been years in the making and has benefited enormously from feedback and input from stakeholders throughout the process. We are grateful to all those who took the time to comment on Request for Information, the Draft policy, or to participate in workshops or Tribal consultations. That thoughtful feedback has helped shape the Final policy, which we believe strikes a balance between reasonable expectations for data sharing and flexibility to allow for a diversity of data types and circumstances. How we incorporated public comments and decision points that led to the Final policy are detailed in the Preamble to the DMS policy.

The Final policy applies to all research funded or conducted by NIH that results in the generation of scientific data. The Final Policy has two main requirements (1) the submission of a Data Management and Sharing Plan (Plan); and (2) compliance with the approved Plan. We are asking for Plans at the time of submission of the application, because we believe planning and budgeting for data management and sharing needs to occur hand in hand with planning the research itself. NIH recognizes that science evolves throughout the research process, which is why we have built in the ability to update DMS Plans, but at the end of the day, we are expecting investigators and institutions to be accountable to the Plans they have laid out for themselves….

Anticipating that variation in readiness, and in recognition of the cultural change we are trying to seed, there is a two-year implementation period. This time will be spent developing the information, support, and tools that the biomedical enterprise will need to comply with this new policy. NIH has already provided additional supplementary information – on (1) elements of a data management and sharing plan; (2) allowable costs; and (3) selecting a data repository – in concert with the policy release….(More)”

Paper by Stephanie Russo Carroll et al: “Concerns about secondary use of data and limited opportunities for benefit-sharing have focused attention on the tension that Indigenous communities feel between (1) protecting Indigenous rights and interests in Indigenous data (including traditional knowledges) and (2) supporting open data, machine learning, broad data sharing, and big data initiatives. The International Indigenous Data Sovereignty Interest Group (within the Research Data Alliance) is a network of nation-state based Indigenous data sovereignty networks and individuals that developed the ‘CARE Principles for Indigenous Data Governance’ (Collective Benefit, Authority to Control, Responsibility, and Ethics) in consultation with Indigenous Peoples, scholars, non-profit organizations, and governments. The CARE Principles are people– and purpose-oriented, reflecting the crucial role of data in advancing innovation, governance, and self-determination among Indigenous Peoples. The Principles complement the existing data-centric approach represented in the ‘FAIR Guiding Principles for scientific data management and stewardship’ (Findable, Accessible, Interoperable, Reusable). The CARE Principles build upon earlier work by the Te Mana Raraunga Maori Data Sovereignty Network, US Indigenous Data Sovereignty Network, Maiam nayri Wingara Aboriginal and Torres Strait Islander Data Sovereignty Collective, and numerous Indigenous Peoples, nations, and communities. The goal is that stewards and other users of Indigenous data will ‘Be FAIR and CARE.’ In this first formal publication of the CARE Principles, we articulate their rationale, describe their relation to the FAIR Principles, and present examples of their application….(More)” See also Selected Readings on Indigenous Data Sovereignty.

Article by Seth Rosenblatt: “Smartphone location data is a dream for marketers who want to know where you go and how long you spend there—and a privacy nightmare. But this kind of geolocation data could also be used to protect people’s voting rights on Election Day.

The newly founded nonprofit Center for New Data is now tracking voters at the polls using smartphone location data to help researchers understand how easy—or difficult—it is for people to vote in different places. Called the Observing Democracy project, the nonpartisan effort is making data on how far people have to travel to vote and how long they have to wait in line available in a privacy-friendly way so it can be used to craft election policies that ensure voting is accessible for everyone.

Election data has already fueled changes in various municipalities and states. A 66-page lawsuit filed by Fair Fight Action against the state of Georgia in the wake of Stacey Abrams’s narrow loss to Brian Kemp in the 2018 gubernatorial race relies heavily on data to back its assertions of unconstitutionally delayed and deferred voter registration, unfair challenges to absentee and provisional ballots, and unjustified purges of voter rolls—all hallmarks of voter suppression.

The promise of Observing Democracy is to make this type of impactful data available much more rapidly than ever before. Barely a month old, Observing Democracy isn’t wasting any time: Its all-volunteer staffers will be receiving data potentially as soon as Nov. 4 on voter wait times at polling locations, travel times to polling stations, and how frequently ballot drop-off boxes are visited, courtesy of location-data mining companies X-Mode Social and Veraset, which was spun off from SafeGraph….(More)”.

Article by Stephanie Chin and Caitlin Chin: “To improve data sharing during global public health crises, it is time to explore the establishment of a common data space for highly infectious diseases. Common data spaces integrate multiple data sources, enabling a more comprehensive analysis of data based on greater volume, range, and access. At its essence, a common data space is like a public library system, which has collections of different types of resources from books to video games; processes to integrate new resources and to borrow resources from other libraries; a catalog system to organize, sort, and search through resources; a library card system to manage users and authorization; and even curated collections or displays that highlight themes among resources.

Even before the COVID-19 pandemic, there was significant momentum to make critical data more widely accessible. In the United States, Title II of the Foundations for Evidence-Based Policymaking Act of 2018, or the OPEN Government Data Act, requires federal agencies to publish their information online as open data, using standardized, machine-readable data formats. This information is now available on the federal data.gov catalog and includes 50 state- or regional-level data hubs and 47 city- or county-level data hubs. In Europe, the European Commission released a data strategy in February 2020 that calls for common data spaces in nine sectors, including healthcare, shared by EU businesses and governments.

Going further, a common data space could help identify outbreaks and accelerate the development of new treatments by compiling line list incidence data, epidemiological information and models, genome and protein sequencing, testing protocols, results of clinical trials, passive environmental monitoring data, and more.

Moreover, it could foster a common understanding and consensus around the facts—a prerequisite to reach international buy-in on policies to address situations unique to COVID-19 or future pandemics, such as the distribution of medical equipment and PPE, disruption to the tourism industry and global supply chains, social distancing or quarantine, and mass closures of businesses….(More). See also Call for Action for a Data Infrastructure to tackle Pandemics and other Dynamic Threats.