Narrowing the data gap: World Bank and Microsoft commit to unlocking better development outcomes for persons with disabilities

Curated on Posted on by Stefaan Verhulst

Blog by Charlotte Vuyiswa McClain-Nhlapo, and Jenny Lay-Flurrie: “Across the world, persons with disabilities remain invisible in the global development agenda. One key reason is because of variances in the availability and use of disability-disaggregated data across organizations and borders.  

While it is estimated that one billion people, or 15 percent of the world’s population, have a disability – more data is needed to understand the true scale of the living conditions and development outcomes for persons with disabilities, and to get clarity on the degree to which persons with disabilities continue to be underserved.  

This reality is a part of what the World Bank calls the disability divide – the gap in societal inclusion for persons with disabilities in all stages of development programs, including education, employment and digital inclusion. The COVID-19 pandemic has exacerbated this risk and exposed some of the existing inequalities faced on a regular basis. 

Many governments around the world use census data to understand a country’s socioeconomic situation and to allocate resources or consider policy to address the needs of its citizens. While every country is on their own journey to leverage data to inform policy and development outcomes, there is an opportunity to bring data on disability together for the global public good, so that groups can more accurately prioritize disability inclusion within global efforts.  

In response to this challenge, the World Bank and Microsoft, in collaboration with the Disability Data Initiative at Fordham University, are partnering to expand both access to and the use of demographics and statistics data to ensure representation of disability, particularly in low- and middle-income countries. The goal of this effort is to develop a public facing, online “disability data hub” to offer information on persons with disabilities across populations, geographies and development indicators.  

Principles for the development of the hub include:  

  • Engaging with the disability community to inform the creation of the hub and its offerings. 
  • Aligning with the United Nations Sustainable Development Goals, which require countries to disaggregate data by disability by 2030. 
  • Taking a holistic approach to data collection on disabilities, including collating and aggregating multiple data sources, such as national household surveys and censuses. 
  • Providing a user-friendly and accessible interface for a wide range of users. 
  • Offering data analysis and accessible visualization tools. 
  • Serving as a knowledge repository by publishing trends and country profiles, offering trainings and capacity building materials and linking to relevant partner resources on disability data disaggregation…(More)”.

Better Data Sharing for Benefits Delivery

Curated on Posted on by Stefaan Verhulst

Article by Chris Sadler and Claire Park: “Robust federal assistance programs and social services are essential to a thriving society. This is especially the case as people continue to contend with the fallout from the COVID-19 pandemic, which jeopardized livelihoods and put millions out of employment. Government benefits at the federal, state, and local level help people across the country pay for food, housing, health care, and other basic living expenses. But more work is required at the federal level to ensure that these benefits reach everyone in need. For instance, the historic $1.2 trillion Infrastructure Investment and Jobs Act signed into law last year included a $14.2 billion program called the Affordable Connectivity Program (ACP) to help qualifying low-income households pay for internet service. While the program is off to a strong start, improved data sharing between federal agencies, state and local governments, and institutions can leverage existing data from other benefits programs to streamline eligibility processes and ensure those who qualify receive the benefit. Expanding data sharing for benefits eligibility also aligns with one of the goals in the recent executive order to advance racial equity.

We discuss how data sharing could be improved, as well as other steps that the federal government can take to maximize the impact of this benefit on the digital divide. The solutions outlined here can be applied to both current and future programs that help people find housing, prepare children for school, and ensure everyone has enough to eat…(More)”.

What Happened to Consensus Reality?

Curated on Posted on by Stefaan Verhulst

Essay by Jon Askonas: “Do you feel that people you love and respect are going insane? That formerly serious thinkers or commentators are increasingly unhinged, willing to subscribe to wild speculations or even conspiracy theories? Do you feel that, even if there’s some blame to go around, it’s the people on the other side of the aisle who have truly lost their minds? Do you wonder how they can possibly be so blind? Do you feel bewildered by how absurd everything has gotten? Do many of your compatriots seem in some sense unintelligible to you? Do you still consider them your compatriots?

If you feel this way, you are not alone.

We have come a long way from the optimism of the 1990s and 2000s about how the Internet would usher in a new golden era, expanding the domain of the information society to the whole world, with democracy sure to follow. Now we hear that the Internet foments misinformation and erodes democracy. Yet as dire as these warnings are, they are usually followed with suggestions that with more scrutiny on tech CEOs, more aggressive content moderation, and more fact-checking,  Americans might yet return to accepting the same model of reality. Last year, a New York Times article titled “How the Biden Administration Can Help Solve Our Reality Crisis”  suggested creating a federal “reality czar.”

This is a fantasy. The breakup of consensus reality — a shared sense of facts, expectations, and concepts about the world — predates the rise of social media and is driven by much deeper economic and technological currents.

Postwar Americans enjoyed a world where the existence of an objective, knowable reality just seemed like common sense, where alternate facts belonged only to fringe realms of the deluded or deluding. But a shared sense of reality is not natural. It is the product of social institutions that were once so powerful they could hold together a shared picture of the world, but are now well along a path of decline. In the hope of maintaining their power, some have even begun to abandon the project of objectivity altogether.

Attempts to restore consensus reality by force — the current implicit project of the establishment — are doomed to failure. The only question now is how we will adapt our institutions to a life together where a shared picture of the world has been shattered.

This series aims to trace the forces that broke consensus reality. More than a history of the rise and fall of facts, these essays attempt to show a technological reordering of social reality unlike any before encountered, and an accompanying civilizational shift not seen in five hundred years…(More)”.

The modern malaise of innovation: overwhelm, complexity, and herding cats

Curated on Posted on by Stefaan Verhulst

Blog by Lucy Mason: “But the modern world is too complicated to innovate alone. Coming up with the idea is the easy bit: developing and implementing it inevitably involves navigating complex and choppy waters: multiple people, funding routes, personal agendas, legal complexity, and strategic fuzziness. All too often, great ideas fail to become reality not because the idea wouldn’t work, but because everything in the ecosystem seems (accidentally) designed to prevent it from working.

Given that innovation is a key Government priority, and so many organisations and people are dedicated to make it happen (such as Innovate UK), this lack of success seems odd. The problem does not lie with the R&D base: despite relative underinvestment by the UK Government the UK punches well above its weight in world-leading R&D. Being an entrepreneur is of course, hard work, high risk and prone to failure even for the most dedicated individuals. But are there particular features which inhibit how innovation is developed, scaled, implemented, and adopted in the UK? I would argue there are three key factors at play: overwhelm (too much), complexity (too vague), and ‘herding cats’ (too hard)…(More)”.

Unleashing the power of big data to guide precision medicine in China

Curated on Posted on by Stefaan Verhulst

Article by Yvaine Ye in Nature: “Precision medicine in China was given a boost in 2016 when the government included the field in its 13th five-year economic plan. The policy blueprint, which defined the country’s spending priorities until 2020, pledged to “spur innovation and industrial application” in precision medicine alongside other areas such as smart vehicles and new materials.

Precision medicine is part of the Healthy China 2030 plan, also launched in 2016. The idea is to use the approach to tackle some major health-care challenges the country faces, such as rising cancer rates and issues related to an ageing population. Current projections suggest that, by 2040, 28% of China’s population will be over 60 years old.

Following the announcement of the five-year plan, China’s Ministry of Science and Technology (MOST) launched a precision-medicine project as part of its National Key Research and Development Program. MOST has invested about 1.3 billion yuan (US$200.4 million) in more than 100 projects from 2016 to 2018. These range from finding new drug targets for chronic diseases such as diabetes to developing better sequencing technologies and building a dozen large population cohorts comprising hundreds of thousands of people from across China.

China’s population of 1.4 billion people means the country has great potential for using big data to study health issues, says Zhengming Chen, an epidemiologist and chronic-disease researcher at the University of Oxford, UK. “The advantage is especially prominent in the research of rare diseases, where you might not be able to have a data set in smaller countries like the United Kingdom, where only a handful of cases exist,” says Chen, who leads the China Kadoorie Biobank, a chronic-disease initiative that launched in 2004. It recruited more than 510,000 adults from 10 regions across China in its first 4 years, collecting data through questionnaires and by recording physical measurements and storing participants’ blood samples for future study. So far, the team has investigated whether some disease-related lifestyle factors that have been identified in the West apply to the Chinese population. They have just begun to dig into participants’ genetic data, says Chen.

Another big-data precision-medicine project launched in 2021, after Huijun Yuan, a physician who has been researching hereditary hearing loss for more than two decades, founded the Institute of Rare Diseases at West China Hospital in Chengdu, Sichuan province, in 2020. By 2025, the institute plans to set up a database of 100,000 people from China who have rare conditions, including spinal muscular atrophy and albinism. It will contain basic health information and data relating to biological samples, such as blood for gene sequencing. Rare diseases are hard to diagnose, because their incidences are low. But the development of technologies such as genetic testing and artificial intelligence driven by big data is providing a fresh approach to diagnosing these rare conditions, and could pave the way for therapies…(More)”.

Aligning investment and values: How an Economic Value Atlas can map regional strategies

Curated on Posted on by Stefaan Verhulst

Report by Adie Tomer and Caroline George: “Traditional built environment and economic development practices are falling short in the face of a convergent set of environmental, economic, and social challenges. With each passing year, more communities find themselves vulnerable to extreme weather events; income disparities continue to rise, leaving too many households unable to afford essential services; and employers, especially many young and minority-owned businesses, often struggle to find talented workers and access financial capital. 

Public, private, and civic leaders increasingly recognize that achieving inclusive growth and designing resilient communities require more than recruiting out-of-town businesses or attempting to reduce highway congestion. Those leaders need a new kind of policy playbook—one that addresses the cross-sectoral challenges regions face and designs strategies across disciplines.  

An Economic Value Atlas, or EVA, is part of that playbook. An EVA is a regional engagement, value-setting, and measurement process culminating in an interactive regional map that indexes neighborhood-level, value-based performance metrics. The overall framework helps practitioners delve into geographic disparities in how the region is living up to its values—opening the door to more equitable, place-based decisionmaking for business, infrastructure, and land use purposes…

The EVA framework consists of five phases of work, each of which can be adjusted based on unique local conditions: 

  • The EVA’s leadership team sets a stakeholder table with a diverse collection of regional voices to serve as the board of directors for the EVA process. 
  • The leadership team and stakeholder table develop a shared vision—a collection of specific long-term goals a region would like to achieve. 
  • A research-driven team translates values into indicators and metrics using sets of categorical indicators and quantitative metrics that reflect the goals stakeholders would like to achieve. 
  • A coding team develops and launches EVA software, which uses dynamic and flexible data to benchmark neighborhood performance relative to regional goals. 
  • The leadership team works with government and civic leaders to inform and guide policy and investment decisions using EVA outputs. 

Critically, the EVA framework is designed to deliver results…(More)”

Parallel Worlds: Revealing the Inequity of Access to Urban Spaces in Mexico City Through Mobility Data

Curated on Posted on by Stefaan Verhulst

Paper by Emmanuel Letouzé et al: “The near-ubiquitous use of mobile devices generates mobility data that can paint pictures of urban behavior at unprecedented levels of granularity and complexity. In the current period of intense sociopolitical polarization, mobility data can help reveal which urban spaces serve to attenuate or accentuate socioeconomic divides. If urban spaces served to bridge class divides, people from different socioeconomic groups would be prone to mingle in areas further removed from their homes, creating opportunities for sharing experiences in the physical world. In an opposing scenario, people would remain among neighbors and peers, creating “local urban bubbles” that reflect and reinforce social inequities and their adverse effects on social mixity, cohesion, and trust. These questions are especially salient in cities with high levels of socioeconomic inequality, such as Mexico City.

Building on a joint research project between Data-Pop Alliance and Oxfam Mexico titled “Mundos Paralelos” [Parallel Worlds], this paper leverages privacy-preserving mobility data to unveil the unequal use and appropriation of urban spaces by the inhabitants of Mexico City. This joint research harnesses a year (2018–2019) of anonymized mobility data to perform mobility and behavioral analysis of specific groups at high spatial resolution. Its main findings suggest that Mexico City is a spatially fragmented, even segregated city: although distinct socioeconomic groups do meet in certain spaces, a pattern emerges where certain points of interest are exclusive to the high- and low-income groups analyzed in this paper. The results demonstrate that spatial inequality in Mexico City is marked by unequal access to government services and cultural sites, which translates into unequal experiences of urban life and biased access to the city. The paper concludes with a series of public policy recommendations to foster a more equitable and inclusive appropriation of public space…(More)”.

A New Model for Saving Lives on Roads Around the World

Curated on Posted on by Stefaan Verhulst

Article by Krishen Mehta & Piyush Tewari: “…In 2016, SaveLIFE Foundation (SLF), an Indian non-profit organization, introduced the Zero Fatality Corridor (ZFC) solution, which has, since its inception, delivered an unprecedented reduction in road crash fatalities on the stretches of road where it has been deployed. The ZFC solution has adapted and added to the Safe System Approach, traditionally a western concept, to make it suitable for Indian conditions and requirements.

The Safe System Approach recognizes that people are fallible and can make mistakes that may be fatal for them or their fellow road-users—irrespective of how well they are trained.

The ZFC model, in turn, is an innovation designed specifically to accommodate the realities, resources, and existing infrastructure in low- and middle-income countries, which are vastly different from their developed counterparts. For example, unlike developed nations, people in low- and middle-income countries often live closer to the highways, and use them on a daily basis on foot or through traditional and slower modes of transportation. This gives rise to high crash conflict areas.

Some of the practices that are a part of the ZFC solution include optimized placement of ambulances at high-fatality locations, the utilization of drones to identify parked vehicles to preemptively prevent rear-end collisions, and road engineering solutions unique to the realities of countries like India. The ZFC model has helped create a secure environment specific to such countries with safer roads, safer vehicles, safer speeds, safer drivers, and rapid post-crash response.

The ZFC model was first deployed in 2016 on the Mumbai-Pune Expressway (MPEW) in Maharashtra, through a collaboration between SLF, Maharashtra State Road Development Corporation (MSRDC), and automaker Mahindra & Mahindra. From 2010 to 2016, the 95-kilometer stretch witnessed 2,579 crashes and 887 fatalities, making it one of India’s deadliest roads…(More)”.

How Covid Tracking Apps Are Pivoting for Commercial Profit

Curated on Posted on by Stefaan Verhulst

Article by Matt Reynolds and Morgan Meaker: “…At its peak, 2.4 million people tracked their symptoms using the Covid Symptom Tracker. It was one of three surveillance studies the UK government used to track and respond to new outbreaks. Data from the tracker led to the UK government adding loss of smell and taste to the official list of Covid-19 symptoms. Between August 2020 and March 2022, the app was funded with £5.1 million ($6.2 million) from the Department of Health and Social Care.

But in early May 2022, Zoe announced in an email to users that its Covid tracking app would no longer be just a place for people to report their Covid symptoms. The Covid Symptom Tracker was becoming the Zoe Health Study, which asks people to take 10 seconds a day to log their mental and physical health beyond Covid. People who agree to take part in this wider study are asked to establish their baseline health—reporting everything from hair loss to mouth ulcers—as well as providing daily health updates. The company says this data will be used to “fight the most important health issues of our time,” but that it might also be used to develop commercial health, nutrition, and lifestyle products. (Zoe also sells nutrition tests and subscriptions to a personalized nutrition platform.)

Zoe isn’t the only Covid app developer pivoting away from the pandemic. In Berlin, a contact-tracing app called Luca is reinventing itself as a payment system, while in northern Italy an app set up to track coronavirus cases now warns citizens about natural disasters. With the most urgent phase of the pandemic now over, developers are looking for ways to squeeze more value out of the users who have downloaded their apps. The great Covid-19 data pivot is well and truly underway…(More)”.

Public Health Struggles to Get Rid of Its Data Silos

Curated on Posted on by Stefaan Verhulst

Article by Carl Smith: “…In September 2019, before the first COVID-19 case was reported in the U.S., the Council of State and Territorial Epidemiologists (CSTE) published a report calling for a “public health data superhighway” capable of detecting health challenges and informing the response to them.

The technology to accomplish this already exists, CSTE noted. But even so, “public health departments struggle to take advantage of these advancements and continue to rely on sluggish, manual processes like paper records, phone calls, spreadsheets, and faxes requiring manual data entry.”

The limitations of this data ecosystem became a considerable liability when public health officials ran up against a virus that had never been seen before, working to both understand and control it at the same time. “There were mixed messages, and the pandemic made us look like our data was not adequate to the task,” says Gail C. Christopher, executive director of the National Collaborative for Health Equity.

This provided an opening for political or social actors to push anti-public health campaigns that continue to fuel public distrust of public health leaders, workers and guidelines. Reliable and timely data could help heal some of the harm that has been done, says Christopher.

“I think every health department has aspects of a complete data system,” says Brian Castrucci, president and CEO of the DeBeaumont Foundation, which funded the CSTE report. “But we need to articulate what a complete data system looks like — right now, we don’t even know what the destination is, so it’s hard to tell when we’re lost.”

A Data Modernization Movement

Data systems improvement is one of three major topics that recur in discussions about rebuilding public health, along with workforce expansion and regaining public trust, says Michael Fraser, executive director of the Association of State and Territorial Health Officials (ASTHO). “A major finding from all the conversations that we’ve had about COVID is that data systems need to be modernized.”

In recent years, there has been considerable effort by the public health community to find ways to move away from “silo-based” or disease-based surveillance between states and the federal government to an enterprise-wide system, says Fraser. “During COVID, a lot of states had a hard time sharing data, and there are many parts of this country where people go back and forth between multiple states on any given day — it’s not just the ability for states to share data with the federal government, but for states to share amongst themselves.”

The CDC’s Data Modernization Initiative, launched in 2020, is a $1.2 billion effort to address this challenge, envisioning resilient, connected systems that could “solve problems before they happen and reduce the harm caused by the problems that do happen.” The CSTE campaign “Data: Elemental to Health” is working to ensure sustained public funding for this work…(More)”.