Making NHS data work for everyone

Curated on Posted on by Stefaan Verhulst

Reform: This report looks at the access and use of NHS data by private sector companies for research or product and service development purposes….

The private sector is an important partner to the NHS and plays a crucial role in the development of healthcare technologies that use data collected by hospitals or GP practices. It provides the skills and know-how to develop data-driven tools which can be used to improve patient care. However, this is not a one-sided exchange as the NHS makes the data available to build these tools and offers medical expertise to make sense of the data. This is known as the “value exchange”. Our research uncovered that there is a lack of clarity over what a fair value exchange looks like. This lack of clarity in conjunction with the lack of national guidance on the types of partnerships that could be developed has led to a patchwork on the ground….

Knowing what the “value exchange” is between patients, the NHS and industry allows for a more informed conversation about what constitutes a fair partnership when there is access to data to create a product or service

WHAT NEEDS TO CHANGE?

  1. Engage with the public
  2. A national strategy
  3. Access to good quality data
  4. Commercial and legal skills…(More)

Harnessing Digital Tools to Revitalize European Democracy

Curated on Posted on by Stefaan Verhulst

Article by Elisa Lironi: “…Information and communication technology (ICT) can be used to implement more participatory mechanisms and foster democratic processes. Often referred to as e-democracy, there is a large range of very different possibilities for online engagement, including e-initiatives, e-consultations, crowdsourcing, participatory budgeting, and e-voting. Many European countries have started exploring ICT’s potential to reach more citizens at a lower cost and to tap into the so-called wisdom of the crowd, as governments attempt to earn citizens’ trust and revitalize European democracy by developing more responsive, transparent, and participatory decisionmaking processes.

For instance, when Anne Hidalgo was elected mayor of Paris in May 2014, one of her priorities was to make the city more collaborative by allowing Parisians to propose policy and develop projects together. In order to build a stronger relationship with the citizens, she immediately started to implement a citywide participatory budgeting project for the whole of Paris, including all types of policy issues. It started as a small pilot, with the city of Paris putting forward fifteen projects that could be funded with up to about 20 million euros and letting citizens vote on which projects to invest in, via ballot box or online. Parisians and local authorities deemed this experiment successful, so Hidalgo decided it was worth taking further, with more ideas and a bigger pot of money. Within two years, the level of participation grew significantly—from 40,000 voters in 2014 to 92,809 in 2016, representing 5 percent of the total urban population. Today, Paris Budget Participatif is an official platform that lets Parisians decide how to spend 5 percent of the investment budget from 2014 to 2020, amounting to around 500 million euros. In addition, the mayor also introduced two e-democracy platforms—Paris Petitions, for e-petitions, and Idée Paris, for e-consultations. Citizens in the French capital now have multiple channels to express their opinions and contribute to the development of their city.

In Latvia, civil society has played a significant role in changing how legislative procedures are organized. ManaBalss (My Voice) is a grassroots NGO that creates tools for better civic participation in decisionmaking processes. Its online platform, ManaBalss.lv, is a public e-participation website that lets Latvian citizens propose, submit, and sign legislative initiatives to improve policies at both the national and municipal level. …

In Finland, the government itself introduced an element of direct democracy into the Finnish political system, through the 2012 Citizens’ Initiative Act (CI-Act) that allows citizens to submit initiatives to the parliament. …

Other civic tech NGOs across Europe have been developing and experimenting with a variety of digital tools to reinvigorate democracy. These include initiatives like Science For You (SCiFY) in Greece, Netwerk Democratie in the Netherlands, and the Citizens Foundation in Iceland, which got its start when citizens were asked to crowdsource their constitution in 2010.

Outside of civil society, several private tech companies are developing digital platforms for democratic participation, mainly at the local government level. One example is the Belgian start-up CitizenLab, an online participation platform that has been used by more than seventy-five municipalities around the world. The young founders of CitizenLab have used technology to innovate the democratic process by listening to what politicians need and including a variety of functions, such as crowdsourcing mechanisms, consultation processes, and participatory budgeting. Numerous other European civic tech companies have been working on similar concepts—Cap Collectif in France, Delib in the UK, and Discuto in Austria, to name just a few. Many of these digital tools have proven useful to elected local or national representatives….

While these initiatives are making a real impact on the quality of European democracy, most of the EU’s formal policy focus is on constraining the power of the tech giants rather than positively aiding digital participation….(More)”

Motivating Participation in Crowdsourced Policymaking: The Interplay of Epistemic and Interactive Aspects

Curated on Posted on by Stefaan Verhulst

Paper by Tanja Aitamurto and Jorge Saldivar in Proceedings of ACM Human-Computer Interaction (CSCW ’18):  “…we examine the changes in motivation factors in crowdsourced policymaking. By drawing on longitudinal data from a crowdsourced law reform, we show that people participated because they wanted to improve the law, learn, and solve problems. When crowdsourcing reached a saturation point, the motivation factors weakened and the crowd disengaged. Learning was the only factor that did not weaken. The participants learned while interacting with others, and the more actively the participants commented, the more likely they stayed engaged. Crowdsourced policymaking should thus be designed to support both epistemic and interactive aspects. While the crowd’s motives were rooted in self-interest, their knowledge perspective showed common-good orientation, implying that rather than being dichotomous, motivation factors move on a continuum. The design of crowdsourced policymaking should support the dynamic nature of the process and the motivation factors driving it….(More)”.

New study on eGovernment shows how Europe’s digital public services can do better

Curated on Posted on by Stefaan Verhulst

European Commission: “Today the European Commission published a new study, the eGovernment benchmark report 2018, which demonstrates that the availability and quality of online public services have improved in the EU. Overall there has been significant progress in respect to the efficient use of public information and services online, transparency of government authorities’ operations and users’ control of personal data, cross-border mobility and key enablers, such as the availability of electronic identity cards and other documents.

EU average scores on different eGov criteria such as user centricity, transparency and cross-border mobility

10 EU countries (Malta, Austria, Sweden, Finland, the Netherlands, Estonia, Lithuania, Latvia, Portugal, Denmark) and Norway are delivering high-quality digital services with a score above 75% on important events of daily life such as moving, finding a job, starting a business or studying. Estonia, Latvia and Lithuania are outperforming the rest of the countries in terms of digitisation of the public administrations and adoption of online public services....

Further efforts are notably needed in cross-border mobility and digital identification. So far only 6 EU countries have notified their eID means which enables their cross-border recognition….(More) (Report)”

Force Google, Apple and Uber to share mapping data, UK advised

Curated on Posted on by Stefaan Verhulst

Aliya Ram and Madhumita Murgia at the Financial Times: “The UK government should force Google, Apple, Uber and others to share their mapping data so that other companies can develop autonomous cars, drones and transport apps, according to an influential campaign group. The Open Data Institute, co-founded by Tim Berners-Lee at MIT and Nigel Shadbolt, artificial intelligence professor at the University of Oxford, warned on Tuesday that big tech companies had become “data monopolies”.

The group said the UK’s Geospatial Commission should ask the companies to share map data with rivals and the public sector in a collaborative database or else force them to do so with legislation.

“Google along with all of the other companies like Apple and Uber are trying to deliver an excellent service to their clients and customers,” said Jeni Tennison, chief executive of the Open Data Institute. “The status quo is not optimal because all of the organisations we are talking about are replicating effort. This means that people are overall not getting the best service from the data that is being collected and maintained. “The large companies are becoming more like data monopolies and that doesn’t give us the best value from our data.”

On Tuesday, the UK government said its Office for Artificial Intelligence had teamed up with the ODI to pilot two new “data trusts” — legal structures that allow multiple groups to share anonymised information. Data trusts have been described as a good way for small business to compete with large rivals that have lots of data, but only a handful have been set up so far.

The trusts will be designed over the next few months and could be used to share data, for example, about cities, the environment, biodiversity and transport. Ms Tennison said the ODI was also working on a data trust with the mayor of London, Sadiq Khan, and local authorities in Greenwich to see how real time data from the internet of things and sensors could be shared with start-ups to solve problems in the city. London’s transport authority has said ride hailing apps would be forced to turn over travel data to the government. Uber now provides public access to its data on traffic and travel conditions in the UK….(More) (Full Report)”.

Crowdsourced data informs women which streets are safe

Curated on Posted on by Stefaan Verhulst

Springwise: “Safe & the City is a free app designed to help users identify which streets are safe for them. Sexual harassment and violent crimes against women in particular are a big problem in many urban environments. This app uses crowdsourced data and crime statistics to help female pedestrians stay safe.

It is a development of traditional navigation apps but instead of simply providing the fastest route, it also has information on what is the safest. The Live Map relies on user data. Victims can report harassment or assault on the app. The information will then be available to other users to warn them of a potential threat in the area. Incidents can be ranked from a feeling of discomfort or threat, verbal harassment, or a physical assault. Whilst navigating, the Live Map can also alert users to potentially dangerous intersections coming. This reminds people to stay alert and not only focus on their phone while walking.

The Safe Sites feature is also a way of incorporating the community. Businesses and organisations can register to be Safe Sites. They will then receive training from SafeSeekers in how to provide the best support and assistance in emergency situations. The locations of such Sites will be available on the app, should a user need one.

The IOS app launched in March 2018 on International Women’s Day. It is currently only available for London…(More)”

What do we learn from Machine Learning?

Curated on Posted on by Stefaan Verhulst

Blog by Giovanni Buttarelli: “…There are few authorities monitoring the impact of new technologies on fundamental rights so closely and intensively as data protection and privacy commissioners. At the International Conference of Data Protection and Privacy Commissioners, the 40th ICDPPC (which the EDPS had the honour to host), they continued the discussion on AI which began in Marrakesh two years ago with a reflection paper prepared by EDPS experts. In the meantime, many national data protection authorities have invested considerable efforts and provided important contributions to the discussion. To name only a few, the data protection authorities from Norway, France, the UK and Schleswig-Holstein have published research and reflections on AI, ethics and fundamental rights. We all see that some applications of AI raise immediate concerns about data protection and privacy; but it also seems generally accepted that there are far wider-reaching ethical implications, as a group of AI researchers also recently concluded. Data protection and privacy commissioners have now made a forceful intervention by adopting a declaration on ethics and data protection in artificial intelligence which spells out six principles for the future development and use of AI – fairness, accountability, transparency, privacy by design, empowerment and non-discrimination – and demands concerted international efforts  to implement such governance principles. Conference members will contribute to these efforts, including through a new permanent working group on Ethics and Data Protection in Artificial Intelligence.

The ICDPPC was also chosen by an alliance of NGOs and individuals, The Public Voice, as the moment to launch its own Universal Guidelines on Artificial Intelligence (UGAI). The twelve principles laid down in these guidelines extend and complement those of the ICDPPC declaration.

We are only at the beginning of this debate. More voices will be heard: think tanks such as CIPL are coming forward with their suggestions, and so will many other organisations.

At international level, the Council of Europe has invested efforts in assessing the impact of AI, and has announced a report and guidelines to be published soon. The European Commission has appointed an expert group which will, among other tasks, give recommendations on future-related policy development and on ethical, legal and societal issues related to AI, including socio-economic challenges.

As I already pointed out in an earlier blogpost, it is our responsibility to ensure that the technologies which will determine the way we and future generations communicate, work and live together, are developed in such a way that the respect for fundamental rights and the rule of law are supported and not undermined….(More)”.

Quantifying Bicycle Network Connectivity in Lisbon Using Open Data

Curated on Posted on by Stefaan Verhulst

Lorena Abad and Lucas van der Meer in information: “Stimulating non-motorized transport has been a key point on sustainable mobility agendas for cities around the world. Lisbon is no exception, as it invests in the implementation of new bike infrastructure. Quantifying the connectivity of such a bicycle network can help evaluate its current state and highlight specific challenges that should be addressed. Therefore, the aim of this study is to develop an exploratory score that allows a quantification of the bicycle network connectivity in Lisbon based on open data.

For each part of the city, a score was computed based on how many common destinations (e.g., schools, universities, supermarkets, hospitals) were located within an acceptable biking distance when using only bicycle lanes and roads with low traffic stress for cyclists. Taking a weighted average of these scores resulted in an overall score for the city of Lisbon of only 8.6 out of 100 points. This shows, at a glance, that the city still has a long way to go before achieving their objectives regarding bicycle use in the city….(More)”.

You can’t characterize human nature if studies overlook 85 percent of people on Earth

Curated on Posted on by Stefaan Verhulst

Daniel Hruschka at the Conversation: “Over the last century, behavioral researchers have revealed the biases and prejudices that shape how people see the world and the carrots and sticks that influence our daily actions. Their discoveries have filled psychology textbooks and inspired generations of students. They’ve also informed how businesses manage their employees, how educators develop new curricula and how political campaigns persuade and motivate voters.

But a growing body of research has raised concerns that many of these discoveries suffer from severe biases of their own. Specifically, the vast majority of what we know about human psychology and behavior comes from studies conducted with a narrow slice of humanity – college students, middle-class respondents living near universities and highly educated residents of wealthy, industrialized and democratic nations.

Blue countries represent the locations of 93 percent of studies published in Psychological Science in 2017. Dark blue is U.S., blue is Anglophone colonies with a European descent majority, light blue is western Europe. Regions sized by population.

To illustrate the extent of this bias, consider that more than 90 percent of studies recently published in psychological science’s flagship journal come from countries representing less than 15 percent of the world’s population.

If people thought and behaved in basically the same ways worldwide, selective attention to these typical participants would not be a problem. Unfortunately, in those rare cases where researchers have reached out to a broader range of humanity, they frequently find that the “usual suspects” most often included as participants in psychology studies are actually outliers. They stand apart from the vast majority of humanity in things like how they divvy up windfalls with strangers, how they reason about moral dilemmas and how they perceive optical illusions.

Given that these typical participants are often outliers, many scholars now describe them and the findings associated with them using the acronym WEIRD, for Western, educated, industrialized, rich and democratic.

WEIRD isn’t universal

Because so little research has been conducted outside this narrow set of typical participants, anthropologists like me cannot be sure how pervasive or consequential the problem is. A growing body of case studies suggests, though, that assuming such typical participants are the norm worldwide is not only scientifically suspect but can also have practical consequences….(More)”.

Declaration of Cities Coalition for Digital Rights

Curated on Posted on by Stefaan Verhulst

New York City, Barcelona and Amsterdam: “We, the undersigned cities, formally come together to form the Cities Coalition for Digital Rights, to protect and uphold human rights on the internet at the local and global level.

The internet has become inseparable from our daily lives. Yet, every day, there are new cases of digital rights abuse, misuse and misinformation and concentration of power around the world: freedom of expression being censored; personal information, including our movements and communications, monitored, being shared and sold without consent; ‘black box’ algorithms being used to make unaccountable decisions; social media being used as a tool of harassment and hate speech; and democratic processes and public opinion being undermined.

As cities, the closest democratic institutions to the people, we are committed to eliminating impediments to harnessing technological opportunities that improve the lives of our constituents, and to providing trustworthy and secure digital services and infrastructures that support our communities. We strongly believe that human rights principles such as privacy, freedom of expression, and democracy must be incorporated by design into digital platforms starting with locally-controlled digital infrastructures and services.

As a coalition, and with the support of the United Nations Human Settlements Program (UN-Habitat), we will share best practices, learn from each other’s challenges and successes, and coordinate common initiatives and actions. Inspired by the Internet Rights and Principles Coalition (IRPC), the work of 300 international stakeholders over the past ten years, we are committed to the following five evolving principles:

01.Universal and equal access to the internet, and digital literacy

02.Privacy, data protection and security

03.Transparency, accountability, and non-discrimination of data, content and algorithms

04.Participatory Democracy, diversity and inclusion

05.Open and ethical digital service standards”