Citizens’ voices for better health and social policies

Curated on Posted on by Stefaan Verhulst

Olivia Biermann et al at PLOS Blog Speaking of Medicine: “Citizen engagement is important to make health and social policies more inclusive and equitable, and to contribute to learning and responsive health and social systems. It is also valuable in understanding the complexities of the social structure and how to adequately respond to them with policies. By engaging citizens, we ensure that their tacit knowledge feeds into the policy-making process. What citizens know can be valuable in identifying feasible policy options, understanding contextual factors, and putting policies into practice. In addition, the benefit of citizen engagement extends much beyond improving health policy-making processes by making them more participatory and inclusive; being engaged in policy-making processes can build patients’ capacity and empower them to speak up for their own and their families’ health and social needs, and to hold policy-makers accountable. Moreover, apart from being involved in their own care, citizen-patients can contribute to quality improvement, research and education.

Most studies on citizen engagement to date originate from high-income countries. The engagement methods used are not necessarily applicable in low- and middle-income countries, and even the political support, the culture of engagement and established citizen engagement processes might be different. Still, published processes of engaging citizens can be helpful in identifying key components across different settings, e.g. in terms of levels of engagement, communication channels and methods of recruitment. Contextualizing the modes of engagement between and within countries is a must.

Examples of citizen engagement

There are many examples of ad hoc citizen engagement initiatives at local, national and international levels. Participedia, a repository of public participation initiatives around the globe, showcases that the field of citizen engagement is extremely vibrant.  In the United Kingdom, the Citizens’ Council of the National Institute for Health and Clinical Excellence (NICE) provides NICE with a public perspective on overarching moral and ethical issues that NICE has to take into account when producing guidance. In the United States of America, the National Issues Forum supports the implementation of deliberative forums on pressing national policy issues. Yet, there are few examples that have long-standing programs of engagement and that engage citizens in evidence-informed policymaking.

A pioneer in engaging citizens in health policy-making processes is the McMaster Health Forum in Hamilton, Canada. The citizens who are invited to engage in a “citizen panel” first receive a pre-circulated, plain-language briefing document to spark deliberation about a pressing health and social-system issue. During the panels, citizens then discuss the problem and its causes, options to address it and implementation considerations. The values that they believe should underpin action to address the issue are captured in a panel summary which is used to inform a policy dialogue on the same topic, also organized by the McMaster Health Forum….(More)”.

‘Digital colonialism’: why some countries want to take control of their people’s data from Big Tech

Curated on Posted on by Stefaan Verhulst

Jacqueline Hicks at the Conversation: “There is a global standoff going on about who stores your data. At the close of June’s G20 summit in Japan, a number of developing countries refused to sign an international declaration on data flows – the so-called Osaka Track. Part of the reason why countries such as India, Indonesia and South Africa boycotted the declaration was because they had no opportunity to put their own interests about data into the document.

With 50 other signatories, the declaration still stands as a statement of future intent to negotiate further, but the boycott represents an ongoing struggle by some countries to assert their claim over the data generated by their own citizens.

Back in the dark ages of 2016, data was touted as the new oil. Although the metaphor was quickly debunked it’s still a helpful way to understand the global digital economy. Now, as international negotiations over data flows intensify, the oil comparison helps explain the economics of what’s called “data localisation” – the bid to keep citizens’ data within their own country.

Just as oil-producing nations pushed for oil refineries to add value to crude oil, so governments today want the world’s Big Tech companies to build data centres on their own soil. The cloud that powers much of the world’s tech industry is grounded in vast data centres located mainly around northern Europe and the US coasts. Yet, at the same time, US Big Tech companies are increasingly turning to markets in the global south for expansion as enormous numbers of young tech savvy populations come online….(More)”.

The Innovation Barometer

Curated on Posted on by Stefaan Verhulst

About: “Demographic changes. Climate crisis. Cybercrime. Budget deficits. Diminishing political legitimacy. From a global perspective there is no shortage of complex problems facing the public sector. The need for innovative solutions is evident, but a systematic knowledge base for necessary public sector innovations is hard to come by.

Private sector companies have been the subject of internationally comparable statistics on innovation for nearly three decades, giving private companies, scholars and public sector decision-makers essential guidance for business development, research and policymaking.

For the public sector, however, anecdotes and opinions have been substitutes for statistical data on innovation. That is why, in 2015, the Danish National Centre for Public Sector Innovation, in association with Statistics Denmark, began separating myth from reality. The result was the Innovation Barometer, the world’s first official statistics on public sector innovation. The statistic is based on a nationwide web-based survey addressed to managers of public sector workplaces of all kinds – kindergartens, schools, hospitals, police stations ect.

While the findings were both surprising and useful, additional insight from national comparisons was missing. But not for long. By 2018 Norway, Sweden, Iceland and Finland had all conducted one or more national surveys, utilising similar methodologies and definitions, though adapted somewhat to better serve national agendas. Their ongoing efforts have also contributed to methodological adjustments, improving the original survey design.

Currently a large variety of people and organisations use Nordic Innovation Barometer data, applying them for their own purposes, e.g. inspiration, policymaking, strategizing, HR development, teaching, research and consultancy services. Or for legitimising certain decisions and criticising others. In short, the Nordic Innovation Barometers are being put to use as the public good they were intended to be, also in ways the developers and adaptors did not foresee.

On behalf of the remarkably innovative Nordic public sectors we are pleased to present the first website containing cross-Nordic comparisons. Although this website does not tell us everything that we would like to know about public sector innovation, it does provide a sorely needed systematic foundation for developing new solutions….(More)”.

Real-time flu tracking. By monitoring social media, scientists can monitor outbreaks as they happen.

Curated on Posted on by Stefaan Verhulst

Charles Schmidt at Nature: “Conventional influenza surveillance describes outbreaks of flu that have already happened. It is based on reports from doctors, and produces data that take weeks to process — often leaving the health authorities to chase the virus around, rather than get on top of it.

But every day, thousands of unwell people pour details of their symptoms and, perhaps unknowingly, locations into search engines and social media, creating a trove of real-time flu data. If such data could be used to monitor flu outbreaks as they happen and to make accurate predictions about its spread, that could transform public-health surveillance.

Powerful computational tools such as machine learning and a growing diversity of data streams — not just search queries and social media, but also cloud-based electronic health records and human mobility patterns inferred from census information — are making it increasingly possible to monitor the spread of flu through the population by following its digital signal. Now, models that track flu in real time and forecast flu trends are making inroads into public-health practice.

“We’re becoming much more comfortable with how these models perform,” says Matthew Biggerstaff, an epidemiologist who works on flu preparedness at the US Centers for Disease Control and Prevention (CDC) in Atlanta, Georgia.

In 2013–14, the CDC launched the FluSight Network, a website informed by digital modelling that predicts the timing, peak and short-term intensity of the flu season in ten regions of the United States and across the whole country. According to Biggerstaff, flu forecasting helps responders to plan ahead, so they can be ready with vaccinations and communication strategies to limit the effects of the virus. Encouraged by progress in the field, the CDC announced in January 2019 that it will spend US$17.5 million to create a network of influenza-forecasting centres of excellence, each tasked with improving the accuracy and communication of real-time forecasts.

The CDC is leading the way on digital flu surveillance, but health agencies elsewhere are following suit. “We’ve been working to develop and apply these models with collaborators using a range of data sources,” says Richard Pebody, a consultant epidemiologist at Public Health England in London. The capacity to predict flu trajectories two to three weeks in advance, Pebody says, “will be very valuable for health-service planning.”…(More)”.

Towards “Government as a Platform”? Preliminary Lessons from Australia, the United Kingdom and the United States

Curated on Posted on by Stefaan Verhulst

Paper by J. Ramon Gil‐Garcia, Paul Henman, and Martha Alicia Avila‐Maravilla: “In the last two decades, Internet portals have been used by governments around the world as part of very diverse strategies from service provision to citizen engagement. Several authors propose that there is an evolution of digital government reflected in the functionality and sophistication of these portals and other technologies. More recently, scholars and practitioners are proposing different conceptualizations of “government as a platform” and, for some, this could be the next stage of digital government. However, it is not clear what are the main differences between a sophisticated Internet portal and a platform. Therefore, based on an analysis of three of the most advanced national portals, this ongoing research paper explores to what extent these digital efforts clearly represent the basic characteristics of platforms. So, this paper explores questions such as: (1) to what extent current national portals reflect the characteristics of what has been called “government as a platform?; and (2) Are current national portals evolving towards “government as a platform”?…(More)”.

Index: The Data Universe 2019

Curated on Posted on by Michelle Winowatan

By Michelle Winowatan, Andrew J. Zahuranec, Andrew Young, Stefaan Verhulst, Max Jun Kim

The Living Library Index – inspired by the Harper’s Index – provides important statistics and highlights global trends in governance innovation. This installment focuses on the data universe.

Please share any additional, illustrative statistics on data, or other issues at the nexus of technology and governance, with us at [email protected]

Internet Traffic:

  • Percentage of the world’s population that uses the internet: 51.2% (3.9 billion people) – 2018
  • Number of search processed worldwide by Google every year: at least 2 trillion – 2016
  • Website traffic worldwide generated through mobile phones: 52.2% – 2018
  • The total number of mobile subscriptions in the first quarter of 2019: 7.9 billion (addition of 44 million in quarter) – 2019
  • Amount of mobile data traffic worldwide: nearly 30 billion GB – 2018
  • Data category with highest traffic worldwide: video (60%) – 2018
  • Global average of data traffic per smartphone per month: 5.6 GB – 2018
    • North America: 7 GB – 2018
    • Latin America: 3.1 GB – 2018
    • Western Europe: 6.7 GB – 2018
    • Central and Eastern Europe: 4.5 GB – 2018
    • North East Asia: 7.1 GB – 2018
    • Southeast Asia and Oceania: 3.6 GB – 2018
    • India, Nepal, and Bhutan: 9.8 GB – 2018
    • Middle East and Africa: 3.0 GB – 2018
  • Time between the creation of each new bitcoin block: 9.27 minutes – 2019

Streaming Services:

  • Total hours of video streamed by Netflix users every minute: 97,222 – 2017
  • Hours of YouTube watched per day: over 1 billion – 2018
  • Number of tracks uploaded to Spotify every day: Over 20,000 – 2019
  • Number of Spotify’s monthly active users: 232 million – 2019
  • Spotify’s total subscribers: 108 million – 2019
  • Spotify’s hours of content listened: 17 billion – 2019
  • Total number of songs on Spotify’s catalog: over 30 million – 2019
  • Apple Music’s total subscribers: 60 million – 2019
  • Total number of songs on Apple Music’s catalog: 45 million – 2019

Social Media:

Calls and Messaging:

Retail/Financial Transaction:

  • Number of packages shipped by Amazon in a year: 5 billion – 2017
  • Total value of payments processed by Venmo in a year: USD 62 billion – 2019
  • Based on an independent analysis of public transactions on Venmo in 2017:
  • Based on a non-representative survey of 2,436 US consumers between the ages of 21 and 72 on P2P platforms:
    • The average volume of transactions handled by Venmo: USD 64.2 billion – 2019
    • The average volume of transactions handled by Zelle: USD 122.0 billion – 2019
    • The average volume of transactions handled by PayPal: USD 141.8 billion – 2019 
    • Platform with the highest percent adoption among all consumers: PayPal (48%) – 2019 

Internet of Things:

Sources:

Companies Collect a Lot of Data, But How Much Do They Actually Use?

Curated on Posted on by Stefaan Verhulst

Article by Priceonomics Data Studio: “For all the talk of how data is the new oil and the most valuable resource of any enterprise, there is a deep dark secret companies are reluctant to share — most of the data collected by businesses simply goes unused.

This unknown and unused data, known as dark data comprises more than half the data collected by companies. Given that some estimates indicate that 7.5 septillion (7,700,000,000,000,000,000,000) gigabytes of data are generated every single day, not using  most of it is a considerable issue.

In this article, we’ll look at this dark data. Just how much of it is created by companies, what are the reasons this data isn’t being analyzed, and what are the costs and implications of companies not using the majority of the data they collect.  

Before diving into the analysis, it’s worth spending a moment clarifying what we mean by the term “dark data.” Gartner defines dark data as:

“The information assets organizations collect, process and store during regular business activities, but generally fail to use for other purposes (for example, analytics, business relationships and direct monetizing). 

To learn more about this phenomenon, Splunk commissioned a global survey of 1,300+ business leaders to better understand how much data they collect, and how much is dark. Respondents were from IT and business roles, and were located in Australia, China, France, Germany, Japan, the United States, and the United Kingdom. across various industries. For the report, Splunk defines dark data as: “all the unknown and untapped data across an organization, generated by systems, devices and interactions.”

While the costs of storing data has decreased overtime, the cost of saving septillions of gigabytes of wasted data is still significant. What’s more, during this time the strategic importance of data has increased as companies have found more and more uses for it. Given the cost of storage and the value of data, why does so much of it go unused?

The following chart shows the reasons why dark data isn’t currently being harnessed:

By a large margin, the number one reason given for not using dark data is that companies lack a tool to capture or analyze the data. Companies accumulate data from server logs, GPS networks, security tools, call records, web traffic and more. Companies track everything from digital transactions to the temperature of their server rooms to the contents of retail shelves. Most of this data lies in separate systems, is unstructured, and cannot be connected or analyzed.

Second, the data captured just isn’t good enough. You might have important customer information about a transaction, but it’s missing location or other important metadata because that information sits somewhere else or was never captured in useable format.

Additionally, dark data exists because there is simply too much data out there and a lot of is unstructured. The larger the dataset (or the less structured it is), the more sophisticated the tool required for analysis. Additionally, these kinds of datasets often time require analysis by individuals with significant data science expertise who are often is short supply. 

The implications of the prevalence are vast. As a result of the data deluge, companies often don’t know where all the sensitive data is stored and can’t be confident they are complying with consumer data protection measures like GDPR. …(More)”.

How does Finland use health and social data for the public benefit?

Curated on Posted on by Stefaan Verhulst

Karolina Mackiewicz at ICT & Health: “…Better innovation opportunities, quicker access to comprehensive ready-combined data, smoother permit procedures needed for research – those are some of the benefits for society, academia or business announced by the Ministry of Social Affairs and Health of Finland when the Act on the Secondary Use of Health and Social Data was introduced.

It came into force on 1st of May 2019. According to the Finnish Innovation Fund SITRA, which was involved in the development of the legislation and carried out the pilot projects, it’s a ‘groundbreaking’ piece of legislation. It’ not only effectively introduces a one-stop-shop for data but it’s also one of the first, if not the first, implementations of the GDPR (the EU’s General Data Protection Regulation) for the secondary use of data in Europe. 

The aim of the Act is “to facilitate the effective and safe processing and access to the personal social and health data for steering, supervision, research, statistics and development in the health and social sector”. A second objective is to guarantee an individual’s legitimate expectations as well as their rights and freedoms when processing personal data. In other words, the Ministry of Health promises that the Act will help eliminate the administrative burden in access to the data by the researchers and innovative businesses while respecting the privacy of individuals and providing conditions for the ethically sustainable way of using data….(More)”.

Introduction to Decision Intelligence

Curated on Posted on by Stefaan Verhulst

Blog post by Cassie Kozyrkov: “…Decision intelligence is a new academic discipline concerned with all aspects of selecting between options. It brings together the best of applied data science, social science, and managerial science into a unified field that helps people use data to improve their lives, their businesses, and the world around them. It’s a vital science for the AI era, covering the skills needed to lead AI projects responsibly and design objectives, metrics, and safety-nets for automation at scale.

Let’s take a tour of its basic terminology and concepts. The sections are designed to be friendly to skim-reading (and skip-reading too, that’s where you skip the boring bits… and sometimes skip the act of reading entirely).

What’s a decision?

Data are beautiful, but it’s decisions that are important. It’s through our decisions — our actions — that we affect the world around us.

We define the word “decision” to mean any selection between options by any entity, so the conversation is broader than MBA-style dilemmas (like whether to open a branch of your business in London).

In this terminology, labeling a photo as cat versus not-cat is a decision executed by a computer system, while figuring out whether to launch that system is a decision taken thoughtfully by the human leader (I hope!) in charge of the project.

What’s a decision-maker?

In our parlance, a “decision-maker” is not that stakeholder or investor who swoops in to veto the machinations of the project team, but rather the person who is responsible for decision architecture and context framing. In other words, a creator of meticulously-phrased objectives as opposed to their destroyer.

What’s decision-making?

Decision-making is a word that is used differently by different disciplines, so it can refer to:

  • taking an action when there were alternative options (in this sense it’s possible to talk about decision-making by a computer or a lizard).
  • performing the function of a (human) decision-maker, part of which is taking responsibility for decisions. Even though a computer system can execute a decision, it will not be called a decision-maker because it does not bear responsibility for its outputs — that responsibility rests squarely on the shoulders of the humans who created it.

Decision intelligence taxonomy

One way to approach learning about decision intelligence is to break it along traditional lines into its quantitative aspects (largely overlapping with applied data science) and qualitative aspects (developed primarily by researchers in the social and managerial sciences)….(More)”.


“Anonymous” Data Won’t Protect Your Identity

Curated on Posted on by Stefaan Verhulst

Sophie Bushwick at Scientific American: “The world produces roughly 2.5 quintillion bytes of digital data per day, adding to a sea of information that includes intimate details about many individuals’ health and habits. To protect privacy, data brokers must anonymize such records before sharing them with researchers and marketers. But a new study finds it is relatively easy to reidentify a person from a supposedly anonymized data set—even when that set is incomplete.

Massive data repositories can reveal trends that teach medical researchers about disease, demonstrate issues such as the effects of income inequality, coach artificial intelligence into humanlike behavior and, of course, aim advertising more efficiently. To shield people who—wittingly or not—contribute personal information to these digital storehouses, most brokers send their data through a process of deidentification. This procedure involves removing obvious markers, including names and social security numbers, and sometimes taking other precautions, such as introducing random “noise” data to the collection or replacing specific details with general ones (for example, swapping a birth date of “March 7, 1990” for “January–April 1990”). The brokers then release or sell a portion of this information.

“Data anonymization is basically how, for the past 25 years, we’ve been using data for statistical purposes and research while preserving people’s privacy,” says Yves-Alexandre de Montjoye, an assistant professor of computational privacy at Imperial College London and co-author of the new study, published this week in Nature Communications.  Many commonly used anonymization techniques, however, originated in the 1990s, before the Internet’s rapid development made it possible to collect such an enormous amount of detail about things such as an individual’s health, finances, and shopping and browsing habits. This discrepancy has made it relatively easy to connect an anonymous line of data to a specific person: if a private detective is searching for someone in New York City and knows the subject is male, is 30 to 35 years old and has diabetes, the sleuth would not be able to deduce the man’s name—but could likely do so quite easily if he or she also knows the target’s birthday, number of children, zip code, employer and car model….(More)”