Politics, Policy and Privatisation in the Everyday Experience of Big Data in the NHS

Curated on Posted on by Stefaan Verhulst
Chapter by Andrew Goffey ; Lynne Pettinger and Ewen Speed in Martin Hand , Sam Hillyard (ed.) Big Data? Qualitative Approaches to Digital Research (Studies in Qualitative Methodology, Volume 13) : “This chapter explains how fundamental organisational change in the UK National Health Service (NHS) is being effected by new practices of digitised information gathering and use. It analyses the taken-for-granted IT infrastructures that lie behind digitisation and considers the relationship between digitisation and big data.
Design/methodology/approach

Qualitative research methods including discourse analysis, ethnography of software and key informant interviews were used. Actor-network theories, as developed by Science and technology Studies (STS) researchers were used to inform the research questions, data gathering and analysis. The chapter focuses on the aftermath of legislation to change the organisation of the NHS.

Findings

The chapter shows the benefits of qualitative research into specific manifestations information technology. It explains how apparently ‘objective’ and ‘neutral’ quantitative data gathering and analysis is mediated by complex software practices. It considers the political power of claims that data is neutral.

Originality/value

The chapter provides insight into a specific case of healthcare data and. It makes explicit the role of politics and the State in digitisation and shows how STS approaches can be used to understand political and technological practice.”

Gov.uk quietly disrupts the problem of online identity login

Curated on Posted on by Stefaan Verhulst

The Guardian: “A new “verified identity” scheme for gov.uk is making it simpler to apply for a new driving licence, passport or to file a tax return online, allowing users to register securely using one log in that connects and securely stores their personal data.
After nearly a year of closed testing with a few thousand Britons, the “Gov.UK Verify” scheme quietly opened to general users on 14 October, expanding across more services. It could have as many as half a million users with a year.
The most popular services are expected to be one for tax credit renewals, and CAP farm information – both expected to have around 100,000 users by April next year, and on their own making up nearly half of the total use.
The team behind the system claim this is a world first. Those countries that have developed advanced government services online, such as Estonia, rely on state identity cards – which the UK has rejected.
“This is a federated model of identity, not a centralised one,” said Janet Hughes, head of policy and engagement at the Government Digital Service’s identity assurance program, which developed and tested the system.
How it works
The Verify system has taken three years to develop, and involves checking a user’s identity against details from a range of sources, including credit reference agencies, utility bills, driving licences and mobile provider bills.
But it does not retain those pieces of information, and the credit checking companies do not know what service is being used. Only a mobile or landline number is kept in order to send verification codes for subsequent logins.
When people subsequently log in, they would have to provide a user ID and password, and verify their identity by entering a code sent to related stored phone number.
To enrol in the system, users have to be over 19, living in the UK, and been resident for over 12 months. A faked passport would not be sufficient: “they would need a very full false ID, and have to not appear on any list of fraudulent identities,” one source at the GDS told the Guardian.
Banks now following gov.uk’s lead
Government developers are confident that it presents a higher barrier to authentication than any other digital service – so that fraudulent transactions will be minimised. That has interested banks, which are understood to be expressing interest in using the same service to verify customer identities through an arms-length verification system.
The government system would not pass on people’s data, but would instead verify that someone is who they claim to be, much like Twitter and Facebook verify users’ identity to log in to third party sites, yet don’t share their users’ data.
The US, Canada and New Zealand have also expressed interest in following up the UK’s lead in the system, which requires separate pieces of verified information about themselves from different sources.
The system then cross-references that verified information with credit reference agencies and other sources, which can include a mobile phone provider, passport, bank account, utility bill or driving licence.
The level of confidence in an individual’s identity is split into four levels. The lowest is for the creation of simple accounts to receive reports or updates: “we don’t need to know who it is, only that it’s the same person returning,” said Hughes.
Level 2 requires that “on the balance of probability” someone is who they say they are – which is the level to which Verify will be able to identify people. Hughes says that this will cover the majority of services.
Level 3 requires identity “beyond reasonable doubt” – perhaps including the first application for a passport – and Level 4 would require biometric information to confirm individual identity.

Could digital badges clarify the roles of co-authors?

Curated on Posted on by Stefaan Verhulst

Dalmeet Singh Chawla  at AAAS Science Magazine: “Ever look at a research paper and wonder how the half-dozen or more authors contributed to the work? After all, it’s usually only the first or last author who gets all the media attention or the scientific credit when people are considered for jobs, grants, awards, and more. Some journals try to address this issue with the “authors’ contributions” sections within a paper, but a collection of science, publishing, and software groups is now developing a more modern solution—digital “badges,” assigned on publication of a paper online, that detail what each author did for the work and that the authors can link to their profiles elsewhere on the Web.

Digital badges could clarify co-authors' roles

Those organizations include publishers BioMed Central and the Public Library of Science; The Wellcome Trust research charity; software development groups Mozilla Science Lab (a group of researchers, developers, librarians, and publishers) and Digital Science (a software and technology firm); and ORCID, an effort to assign researchers digital identifiers. The collaboration presented its progress on the project at the Mozilla Festival in London that ended last week. (Mozilla is the open software community behind the Firefox browser and other programs.)
The infrastructure of the badges is still being established, with early prototypes scheduled to launch early next year, according to Amye Kenall, the journal development manager of open data initiatives and journals at BioMed Central. She envisions the badge process in the following way: Once an article is published, the publisher would alert software maintained by Mozilla to automatically set up an online form, where authors fill out roles using a detailed contributor taxonomy. After the authors have completed this, the badges would then appear next to their names on the journal article, and double-clicking on a badge would lead to the ORCID site for that particular author, where the author’s badges, integrated with their publishing record, live….
The parties behind the digital badge effort are “looking to change behavior” of scientists in the competitive dog-eat-dog world of academia by acknowledging contributions, says Kaitlin Thaney, director of Mozilla Science Lab. Amy Brand, vice president of academic and research relations and VP of North America at Digital Science, says that the collaboration believes that the badges should be optional, to accommodate old-fashioned or less tech-savvy authors. She says that the digital credentials may improve lab culture, countering situations where junior scientists are caught up in lab politics and the “star,” who didn’t do much of the actual research apart from obtaining the funding, gets to be the first author of the paper and receive the most credit. “All of this calls out for more transparency,” Brand says….”

Open Data – Searching for the right questions

Curated on Posted on by Stefaan Verhulst

Talk by Boyan Yurukov at TEDxBG: “Working on various projects Boyan started a sort of a quest for better transparency. It came with the promise of access that would yield answers to what is wrong and what is right with governments today. Over time, he realized that better transparency and more open data bring us almost no relevant answers. Instead, we get more questions and that’s great news. Questions help us see what is relevant, what is hidden, what our assumptions are. That’s the true value of data.
Boyan Yurukov is a software engineer and open data advocate based in Frankfurt. Graduated Computational Engineering with Data Mining from TU Darmstadt. Involved in data liberation, crowd sourcing and visualization projects focused on various issues in Bulgaria as well as open data legislation….

City slicker

Curated on Posted on by Stefaan Verhulst

The Economist on how “Data are slowly changing the way cities operate…WAITING for a bus on a drizzly winter morning is miserable. But for London commuters Citymapper, an app, makes it a little more bearable. Users enter their destination into a search box and a range of different ways to get there pop up, along with real-time information about when a bus will arrive or when the next Tube will depart. The app is an example of how data are changing the way people view and use cities. Local governments are gradually starting to catch up.
Nearly all big British cities have started to open up access to their data. On October 23rd the second version of the London Datastore, a huge trove of information on everything from crime statistics to delays on the Tube, was launched. In April Leeds City council opened an online “Data Mill” which contains raw data on such things as footfall in the city centre, the number of allotment sites or visits to libraries. Manchester also releases chunks of data on how the city region operates.
Mostly these websites act as tools for developers and academics to play around with. Since the first Datastore was launched in 2010, around 200 apps, such as Citymapper, have sprung up. Other initiatives have followed. “Whereabouts”, which also launched on October 23rd, is an interactive map by the Future Cities Catapult, a non-profit group, and the Greater London Authority (GLA). It uses 235 data sets, some 150 of them from the Datastore, from the age and occupation of London residents to the number of pubs or types of restaurants in an area. In doing so it suggests a different picture of London neighbourhoods based on eight different categories (see map, and its website: whereaboutslondon.org)….”

Research Handbook On Transparency

Curated on Posted on by Stefaan Verhulst

New book edited by Padideh Ala’i and Robert G. Vaughn: ‘”Transparency” has multiple, contested meanings. This broad-ranging volume accepts that complexity and thoughtfully contrasts alternative views through conceptual pieces, country cases, and assessments of policies–such as freedom of information laws, whistleblower protections, financial disclosure, and participatory policymaking procedures.’
– Susan Rose-Ackerman, Yale University Law School, US
In the last two decades transparency has become a ubiquitous and stubbornly ambiguous term. Typically understood to promote rule of law, democratic participation, anti-corruption initiatives, human rights, and economic efficiency, transparency can also legitimate bureaucratic power, advance undemocratic forms of governance, and aid in global centralization of power. This path-breaking volume, comprising original contributions on a range of countries and environments, exposes the many faces of transparency by allowing readers to see the uncertainties, inconsistencies and surprises contained within the current conceptions and applications of the term….
The expert contributors identify the goals, purposes and ramifications of transparency while presenting both its advantages and shortcomings. Through this framework, they explore transparency from a number of international and comparative perspectives. Some chapters emphasize cultural and national aspects of the issue, with country-specific examples from China, Mexico, the US and the UK, while others focus on transparency within global organizations such as the World Bank and the WTO. A number of relevant legal considerations are also discussed, including freedom of information laws, financial disclosure of public officials and whistleblower protection…”

Ambulance Drone is a flying first aid kit that could save lives

Curated on Posted on by Stefaan Verhulst

Springwise: “When a medical emergency takes place, the response time can make all the difference between a life saved and a life lost. Unfortunately, ambulances can get stuck in traffic and on average they arrive 10 minutes after the emergency call has been made, in which time a cardiac arrest victim may have already succumbed to a lack of oxygen to the brain. We’ve already seen Germany’s Defikopter use drones to ensure defibrillators are on scene by the time a medical professional arrives, but now the Ambulance Drone is an all-purpose medical toolkit that can be automatically flown to any emergency situation and used to guide citizens to make non-technical lifesaving procedures.
Created by Alex Monton, a graduate of the Delft University of Technology, the drone is custom designed to deliver in the event of an emergency. Inside, it houses a compact defibrillator, medication and CPR aids, as well as other essential supplies for the layperson to use while they wait for a medical professional. The idea is that those at the scene can phone emergency services as normal, giving their location. An ambulance and the Ambulance Drone are despatched immediately, with the drone capable of arriving in around 1 minute.
Once it’s there, the call can be transferred to the drone, which has in-built speakers. This frees the caller’s hands to perform tasks such as placing the victim in the recovery position and preparing the defibrillator, with vocal guidance from the emergency response team. The team can see live video of the event to make sure that any procedures are completed correctly, as well as passing on relevant info to the approaching ambulance…”

Ebola’s Information Paradox

Curated on Posted on by Stefaan Verhulst
 Steven Johnson at The New York Times:” …The story of the Broad Street outbreak is perhaps the most famous case study in public health and epidemiology, in large part because it led to the revolutionary insight that cholera was a waterborne disease, not airborne as most believed at the time. But there is another element of the Broad Street outbreak that warrants attention today, as popular anxiety about Ebola surges across the airwaves and subways and living rooms of the United States: not the spread of the disease itself, but the spread of information about the disease.

It was a full seven days after Baby Lewis became ill, and four days after the Soho residents began dying in mass numbers, before the outbreak warranted the slightest mention in the London papers, a few short lines indicating that seven people had died in the neighborhood. (The report understated the growing death toll by an order of magnitude.) It took two entire weeks before the press began treating the outbreak as a major news event for the city.

Within Soho, the information channels were equally unreliable. Rumors spread throughout the neighborhood that the entire city had succumbed at the same casualty rate, and that London was facing a catastrophe on the scale of the Great Fire of 1666. But this proved to be nothing more than rumor. Because the Soho crisis had originated with a single-point source — the poisoned well — its range was limited compared with its intensity. If you lived near the Broad Street well, you were in grave danger. If you didn’t, you were likely to be unaffected.

Compare this pattern of information flow to the way news spreads now. On Thursday, Craig Spencer, a New York doctor, was given a diagnosis of Ebola after presenting a high fever, and the entire world learned of the test result within hours of the patient himself learning it. News spread with similar velocity several weeks ago with the Dallas Ebola victim, Thomas Duncan. In a sense, it took news of the cholera outbreak a week to travel the 20 blocks from Soho to Fleet Street in 1854; today, the news travels at nearly the speed of light, as data traverses fiber-optic cables. Thanks to that technology, the news channels have been on permanent Ebola watch for weeks now, despite the fact that, as the joke went on Twitter, more Americans have been married to Kim Kardashian than have died in the United States from Ebola.

As societies and technologies evolve, the velocities vary with which disease and information can spread. The tremendous population density of London in the 19th century enabled the cholera bacterium to spread through a neighborhood with terrifying speed, while the information about that terror moved more slowly. This was good news for the mental well-being of England’s wider population, which was spared the anxiety of following the death count as if it were a stock ticker. But it was terrible from a public health standpoint; the epidemic had largely faded before the official institutions of public health even realized the magnitude of the outbreak….

Information travels faster than viruses do now. This is why we are afraid. But this is also why we are safe.”

European Union Open Data Portal

Curated on Posted on by Stefaan Verhulst
About: “The European Union Open Data Portal is the single point of access to a growing range of data from the institutions and other bodies of the European Union (EU). Data are free for you to use and reuse for commercial or non-commercial purposes.
By providing easy and free access to data, the portal aims to promote their innovative use and unleash their economic potential. It also aims to help foster the transparency and the accountability of the institutions and other bodies of the EU.
The EU Open Data Portal is managed by the Publications Office of the European Union. Implementation of the EU’s open data policy is the responsibility of the Directorate-General for Communications Networks, Content and Technology of the European Commission.
What can I find on the portal?
The portal provides a metadata catalogue giving access to data from the institutions and other bodies of the EU. To facilitate reuse, these metadata are based on common encoding rules and standardized vocabularies.To learn more, see Linked Data.
Data are available in both human and machine readable formats for immediate reuse. You will also find a selection of applications built around EU data.To learn more, see Applications.How can I reuse these data?
As a general principle, you can reuse data free of charge, provided that the source is acknowledged (see legal notice).Specific conditions on reuse, related mostly to the protection of third-party intellectual property rights, apply to a small number of data. A link to these conditions is displayed on the relevant data pages.
How can I participate in the portal?
Another important goal of the portal is to engage with the user community around EU open data. You can participate by:

  • suggesting datasets,
  • giving your feedback and suggestions, and
  • sharing your apps or the use you have made with the data from the portal.

Get in touch with us!

On policy and delivery

Curated on Posted on by Stefaan Verhulst

Speech by Mike Bracken (gov.uk): “…most of the work the civil service does goes unseen, or at least unheralded. But whether it’s Ebola screens, student loans, renewing your car tax, or a thousand other things, that work is vital to everyone in the UK.
Often that work is harder than it needs to be.
I don’t think anyone disagrees that the civil service needs reform. It’s the nature of that reform I want to talk about today.
The Internet has changed everything. Digital is the technological enabler of this century. And, in any sector you care to name, it’s been the lifeblood of organisations that have embraced it, and a death sentence for those that haven’t. If you take away one thing today, please make it this: government is not immune to the seismic changes that digital technology has brought to bear.
The Internet is changing the organising principle of every industry it touches, mostly for the better: finance, retail, media, transport, energy. Some industries refuse to change their organising principle. The music industry was dominated by producers – the record labels – now it’s dominated by digital distribution – like Spotify and their ilk.
Others, like airlines, have rapidly changed how they work internally, and are organised radically differently in order to serve users in a digital age. British Airways used to have over 80 ticket types, with departments and hierarchies competing to attract users. Now it has a handful, and the organisation is digital first and much simpler. These changes are invisible to the majority, but that’s doesn’t make the changes any less significant.
Twenty five years into the era of digital transformation, the Internet has a 100% track record of success making industries simpler to users while forcing organisations to fundamentally change how they’re structured. These characteristics are not going away. Yet the effect on the civil service has been, until very recently, marginal.
This is because we deferred our digital development by grouping digital services into enormous, multi-year IT contracts, or what we refer to as ‘Big IT’. Or in short, we gave away our digital future to the IT crowd. While most large organisations reversed these arrangements we have only recently separated our future strategy – digital literacy and digital service provision – from the same contracts that handle commodity technology. By clinging to this model for 15 years, we have created a huge problem for everyone involved in delivery and policy.
Today I want to talk about two things.
The first is delivery, because I believe delivery to users, not policy, should be the organising principle of a reformed civil service.
And the second is skills, and why it’s time for the civil service to put digital skills at the heart of the machine….”