Tim Kelsey (NHS) on why patient and citizen participation is fundamental to high quality health and care services: “…But above all my priority is to improve the way in which health and care services listen to people – and can therefore act and change. The work of entrepreneurs and apps developers like Patients Like Me, Patient Opinion and iwantgreatcare confirms the benefits of real time patient and citizen participation. The challenge is to do this at scale: open the doors, invite the whole community into the job of improving our national health service. Share decision making. Everybody needs the opportunity – and should be encouraged – to participate.
In April, the NHS did something unprecedented – it launched the Friends and Family Test (FFT), the first time a health service has reported a single measure of patient satisfaction for every hospital. It asked people to say whether they would recommend local inpatient and A&E services; the results are published every month on NHS Choices. By October more than 1m people had participated and hundreds of thousands had volunteered additional real time comments and feedback to local hospitals. ‘Great news’, said David Cameron – who has championed FFT from the start – in a tweet to mark the milestone, ‘giving patients a stronger voice in the NHS’.
This is the boldest move yet to promote patient voice at volume in the NHS and to concentrate our collective focus on improvement in care. At Hillingdon Hospitals NHS Trust, patients reported they could not sleep at night so staff have launched a ‘comfort at night’ campaign and developed a protocol for patient experience ‘never events’. In Lewisham, patients complained about poor communication and staff attitudes. They now plan daily visits for each patient. In Hull, bereaved families complained they had to pay car parking fees; the Trust has now given free passes to relatives in mourning. Routine feedback enables a different kind of conversation between the patient and the clinician. It is a catalyst for change. Commissioners will have to demonstrate how they are improving FFT for local communities to qualify for Quality Premium incentives.
This kind of customer insight is fundamental to the way we make choices as consumers. The NHS is not a hotel chain, nor a city authority: but there are vital lessons it can learn from Amazon and Trip Adviser about the power of transparency and feedback. In New York, more than 90,000 people every day share their views by phone, email and tweet on rubbish collections, potholes and dangerous buildings – and the city has become safer and cleaner.
Friends and family has its critics: people worry about the potential for gaming, for example. But the evidence, after six months, is of overwhelming human benefit and that’s why every maternity unit started to offer FFT to patients in October and why every NHS service will do so from 2015. It’s also why we are now requiring that every local organisation should offer people the chance to comment on, as well as rate, services from next year (most already do).
Some people ask me how we are ensuring the focus on transparency and participation is inclusive. We have launched Care Connect, a pilot project to test how giving people access by telephone and social media could improve feedback and complaints. Recognising that digital exclusion is an issue in some of our communities, we have started a partnership with the Tinder Foundation to help 100,000 people learn how to go online for health benefit. None of these initiatives exist in isolation, nor do I see them as ‘silver bullets’. My aim is to work with and build on existing good practice to make people’s voices heard and help the NHS act on them.
In a characteristically thoughtful talk last week, MT Rainey, social activist and former marketing guru, issued this challenge to the NHS: ‘How will we make the wisdom of the crowd meet the kindness of strangers?’ How do the tools of our age – big data, the internet, the mobile phone – meet the values of our species: compassion and honesty and doing our best for others? Friends and family is a good start. We are witnessing the birth of a new knowledge economy and a new social movement. The future is open.”
Data isn't a four-letter word
Speech by Neelie Kroes, Vice-President of the European Commission responsible for the Digital Agenda: “I want to talk about data too: the opportunity as well as the threat.
Making data the engine of the European economy: safeguarding fundamental rights capturing the data boost, and strengthening our defences.
Data is at a cross-roads. We have opportunities; open data, big data, datamining, cloud computing. Tim Berners Lee, creator of the world wide web, saw the massive potential of open data. As he put it, if you put that data online, it will be used by other people to do wonderful things, in ways that you could never imagine.
On the other hand, we have threats: to our privacy and our values, and to the openness that makes it possible to innovate, trade and exchange.
Get it right and we can safeguard a better economic future. Get it wrong, and we cut competitiveness without protecting privacy. So we remain dependent on the digital developments of others: and just as vulnerable to them.
How do we find that balance? Not with hysteria; nor by paralysis. Not by stopping the wonderful things, simply to prevent the not-so-wonderful. Not by seeing data as a dirty word.
We are seeing a whole economy develop around data and cloud computing. Businesses using them, whole industries depending on them, data volumes are increasing exponentially. Data is not just an economic sideshow, it is a whole new asset class; requiring new skills and creating new jobs.
And with a huge range of applications. From decoding human genes to predicting the traffic, and even the economy. Whatever you’re doing these days, chances are you’re using big data (like translation, search, apps, etc).
There is increasing recognition of the data boost on offer. For example, open data can make public administrations more transparent and stimulate a rich innovative market. That is what the G8 Leaders recognised in June, with their Open Data Charter. For scientists too, open data and open access offer new ways to research and progress.
That is a philosophy the Commission has shared for some time. And that is what our ‘Open Data’ package of December 2011 is all about. With new EU laws to open up public administrations, and a new EU Open Data Portal. And all EU-funded scientific publications available under open access.
Now not just the G8 and the Commission are seeing this data opportunity: but the European Council too. Last October, they recognised the potential of big data innovation, the need for a single market in cloud computing; and the urgency of Europe capitalising on both.
We will be acting on that. Next spring, I plan a strategic agenda for research on data. Working with private partners and national research funders to shape that agenda, and get the most bang for our research euro.
And, beyond research, there is much we can do to align our work and support secure big data. From training skilled workers, to modernising copyright for data and text mining, to different actors in the value chain working together: for example through a public-private partnership.
…Empowering people is not always easy in this complex online world. I want to see technical solutions emerge that can do that, give users control over their desired level of privacy, how their data will be used, and making it easier to verify online rights are respected.
How can we do that? How can we ensure systems that are empowering, transparent, and secure? There are a number of subtleties in play. Here’s my take.
First, companies engaged in big data will need to start thinking about privacy protection at every stage: and from system development, to procedures and practices.
This is the principle of “privacy by design”, set out clearly in the proposed Data Protection Regulation. In other words, from now on new business ideas have two purposes: delivering a service and protecting privacy at the right level.
Second, also under the regulation, big data applications that might put fundamental rights at risk would require the company to carry out a “Privacy Impact Assessment”. This is another good way to combine innovation and privacy: ensuring you think about any risks from the start.
Third, sometimes, particularly for personal data, a company might realise they need user consent. Consent is a cornerstone of data protection rules, and should stay that way.
But we need to get smart, and apply common sense to consent. Users can’t be expected to know everything. Nor asked to consent to what they cannot realistically understand. Nor presented with false dilemmas, a black-and-white choice between consenting or getting shut out of services.
Fourth, we can also get smart when it comes to anonymisation. Sometimes, full anonymisation means losing important information, so you can no longer make the links between data. That could make the difference between progress or paralysis. But using pseudonyms can let you to analyse large amounts of data: to spot, for example, that people with genetic pattern X also respond well to therapy Y.
So it is understandable why the European Parliament has proposed a more flexible data protection regime for this type of data. Companies would be able to process the data on grounds of legitimate interest, rather than consent. That could make all the positive difference to big data: without endangering privacy.
Of course, in those cases, companies still to minimise privacy risks. Their internal processes and risk assessments must show how they comply with the guiding principles of data protection law. And – if something does go wrong – the company remains accountable.
Indeed company accountability is another key element of our proposal. And here again we welcome the European Parliament’s efforts to reinforce that. Clearly, you might assure accountability in different ways for different companies. But standards for compliance and processes could make a real difference.
A single data protection law for Europe would be a big step forward. National fortresses and single market barriers just make it harder for Europe to lead in digital, harder for Europe to become the natural home of secure online services. Data protection cannot mean data protectionism. Rather, it means safeguarding privacy does not come at the expense of innovation: with laws both flexible and future proof, pragmatic and proportionate, for a changing world….
But data protection rules are really just the start. They are only part of our response to the Snowden revelations….”
Phone Apps Help Government, Others Counter Violence Against Women
NextGov: “Smart and mobile phones have helped authorities solve crimes from beatings that occurred during the London riots to the Boston Marathon bombing. A panel of experts gathered on Monday said the devices can also help reduce and combat rapes and other gender-based violence.
Smartphone apps and text messaging services proliferated in India following a sharp rise in reported gang rapes, including the brutal 2012 rape and murder of a 23-year-old medical student in Delhi, according to panelists at the Wilson Center event on gender-based violence and innovative technologies.
The apps fall into four main categories, said Alex Dehgan, chief data scientist at the United States Agency for International Development: apps that aid sexual assault and domestic violence victims, apps that empower women to fight back against gender-based violence, apps focused on advocacy and apps that crowdsource and map cases of sexual assault.
The final category of apps is largely built on the Ushahidi platform, which was developed to track reports of missing people following the 2010 Haiti earthquake.
One of the apps, Safecity, offers real-time alerts about sexual assaults across India to help women identify unsafe areas.
Similar apps have been launched in Egypt and Syria, Dehgan said. In lower-tech countries the systems often operate using text messages rather than smartphone apps so they’re more widely accessible.
One of the greatest impediments to using mobile technology to reduce gender violence is third world nations in which women often don’t have access to their own mobile or smartphones and rural areas in the U.S. and abroad in which there is limited service or broadband, Christopher Burns, USAID’s team leader for mobile access, said.
Burns suggested international policymakers should align plans for expanding broadband and mobile service with crowdsourced reports of gender violence.
“One suggestion for policy makers to focus on is to take a look at the crowd maps we’ve talked about today and see where there are greater incidences of gender-based violence and violence against women,” he said. “In all likelihood, those pockets probably don’t have the connectivity, don’t have the infrastructure [and] don’t have the capacity in place for survivors to benefit from those tools.”
One tool that’s been used in the U.S. is Circle of 6, an app for women on college campuses to automatically draw on friends when they think they’re in danger. The app allows women to pick six friends they can automatically text if they think they’re in a dangerous situation, asking them to call with an excuse for them to leave.
The app is designed to look like a game so it isn’t clear women are using their phones to seek help, said Nancy Schwartzman, executive director of Tech 4 Good, which developed the app.
Schwartzman has heard reports of gay men on college campuses using the app as well, she said. The military has been in contact with Tech 4 Good about developing a version of the app to combat sexual assault on military bases, she said.”
Where Do You Want to Dwell?
Stephen Buckner @ Census Blog: “New Census Mobile App Showcases Local Statistics for People on the Go
America has always been a nation on the move. Whether you are looking for a career change or a new neighborhood to call home, life decisions affect each of us every day. With roughly half of Americans now owning smartphones, everyone should be able to access the wealth of statistics the Census Bureau collects to make informed decisions on the go, whether at home or on the road. What good are data if nobody but the experts can easily access them? The Census Bureau uses 21st century technology to meet its centuries-old mission, making the statistics that define our growing, changing nation more accessible to the public than ever before.
The Census Bureau’s new mobile app, dwellr, provides those on the go with immediate, personalized access to the latest demographic, socio-economic and housing statistics from the American Community Survey for neighborhoods across the nation. Using the level of importance you place on a location’s characteristics, the app generates a list of top 25 towns or cities most suitable for you. Once you have used the app, it saves your selections on your phone so you can see how they match up against each new place you visit.
With more than 30 million Americans moving last year, dwellr allows for quick and easy access to information to help make the decision, including the ages of residents, how many families have children, median income and housing costs. Dwellr allows Apple and Android smartphone users to explore a range of questions making it a powerful tool for homebuyers, members of the military being deployed domestically, real estate agents, new businesses and teachers helping students learn about their communities….
The app is just the latest product from the Census Bureau’s digital transformation and provides statistics to more Americans in a new and user-friendly way. It follows the successful release of our hugely popular America’s Economy mobile app, which now has more than 100,000 downloads. Coming soon, you will see an upgraded census.gov website with enhanced search and navigation features that are based on several years of customer feedback. We continue to open up more of our data to developers as part of our API, including 30 years of decennial statistics, in addition to the American Community Survey statistics that power dwellr.
As we continue to align ourselves with the Digital Government Strategy, our free mobile apps are just one way we are making our statistics available anytime, anywhere, and on nearly any device.”
We must create a culture of “open data makers”
Rufus Pollock (@rufuspollock), Founder and Director of the Open Knowledge Foundation: “Open data and open knowledge are fundamentally about empowerment, about giving people – citizens, journalists, NGOs, companies and policy-makers – access to the information they need to understand and shape the world around them.
Through openness, we can ensure that technology and data improve science, governance, and society. Without it, we may see the increasing centralisation of knowledge – and therefore power – in the hands of the few, and a huge loss in our potential, individually and collectively, to innovate, understand, and improve the world around us.
Open data is data that can be freely accessed, used, built upon and shared by anyone, for any purpose. With digital technology – from mobiles to the internet – increasingly everywhere, we’re seeing a data revolution. Its a revolution both in the amount of data available and in our ability to use, and share, that data. And it’s changing everything we do – from how we travel home from work to how scientists do research, to how government set policy….
its about people, the people who use data, and the people who use the insights from that data to drive change. We need to create a culture of “open data makers”, people able and ready to make apps and insights with open data. We need to connect open data with those who have the best questions and the biggest needs – a healthcare worker in Zambia, the London commuter travelling home – and go beyond the data geeks and the tech savvy.”
Book Review: Three Harbingers of Change
Howard Rheingold reviews the following books in Strategy and Business:
Viktor Mayer-Schönberger and Kenneth Cukier
Big Data: A Revolution That Will Transform How We Live, Work, and Think
(Houghton Mifflin Harcourt, 2013)
Marina Gorbis
The Nature of the Future: Dispatches from the Socialstructed World
(Free Press, 2013)
Henry Jenkins, Sam Ford, and Joshua Green
Spreadable Media: Creating Value and Meaning in a Networked Culture
(New York University Press, 2013)
“Whether you invest, build, teach, research, regulate, investigate, heal, entertain, or sell, major changes in how you do what you do are looming. “Big data,” much in the media spotlight recently—particularly for the revelations of the National Security Agency’s (NSA’s) surveillance of “metadata”—is probably already changing how you do your work. But socialstructing and spreadable media, two new terms that signal similarly momentous shifts, may still be unfamiliar. This year’s best business books on digitization can equip you to better understand all three phenomena and the changes that they will enable and engender….”
The Age of Democracy
Xavier Marquez at Abandoned Footnotes: “This is the age of democracy, ideologically speaking. As I noted in an earlier post, almost every state in the world mentions the word “democracy” or “democratic” in its constitutional documents today. But the public acknowledgment of the idea of democracy is not something that began just a few years ago; in fact, it goes back much further, all the way back to the nineteenth century in a surprising number of cases.
Here is a figure I’ve been wanting to make for a while that makes this point nicely (based on data graciously made available by the Comparative Constitutions Project). The figure shows all countries that have ever had some kind of identifiable constitutional document (broadly defined) that mentions the word “democracy” or “democratic” (in any context – new constitution, amendment, interim constitution, bill of rights, etc.), arranged from earliest to latest mention. Each symbol represents a “constitutional event” – a new constitution adopted, an amendment passed, a constitution suspended, etc. – and colored symbols indicate that the text associated with the constitutional event in question mentions the word “democracy” or “democratic”…
The earliest mentions of the word “democracy” or “democratic” in a constitutional document occurred in Switzerland and France in 1848, as far as I can tell.[1] Participatory Switzerland and revolutionary France look like obvious candidates for being the first countries to embrace the “democratic” self-description; yet the next set of countries to embrace this self-description (until the outbreak of WWI) might seem more surprising: they are all Latin American or Caribbean (Haiti), followed by countries in Eastern Europe (various bits and pieces of the Austro-Hungarian empire), Southern Europe (Portugal, Spain), Russia, and Cuba. Indeed, most “core” countries in the global system did not mention democracy in their constitutions until much later, if at all, despite many of them having long constitutional histories; even French constitutions after the fall of the Second Republic in 1851 did not mention “democracy” until after WWII. In other words, the idea of democracy as a value to be publicly affirmed seems to have caught on first not in the metropolis but in the periphery. Democracy is the post-imperial and post-revolutionary public value par excellence, asserted after national liberation (as in most of the countries that became independent after WWII) or revolutions against hated monarchs (e.g., Egypt 1956, Iran 1979, both of them the first mentions of democracy in these countries but not their first constitutions).
David Cameron's Transparency Revolution? The Impact of Open Data in the UK
Paper by Ben Worthy: “This article examines the impact of the UK Government’s Transparency agenda, focusing on the publication of spending data at local government level. It measures the democratic impact in terms of creating transparency and accountability, public participation and everyday information. The study uses a survey of local authorities, interviews and FOI requests to build a picture of use and impact.
It argues that the spending has led to some accountability, though from those already monitoring government rather than citizens. It has not led to increased participation, as it lacks the narrative or accountability instruments to fully use it. Nor has it created a new stream of information to underpin citizen choice, though new innovations offer this possibility.
The evidence points to third party innovations as the key. They can contextualise and ‘localise’ information and may also provide the comparison to the first step in more effective accountability.
The superficially simple and neutral reforms conceal complex political dynamics. The very design lends itself to certain framing effects, further compounded by assumptions and blurred concepts and a lack of accountability instruments to enforce problems raised by the data.”
The United States Releases its Second Open Government National Action Plan
Nick Sinai and Gayle Smith at the White House: “Since his first full day in office, President Obama has prioritized making government more open and accountable and has taken substantial steps to increase citizen participation, collaboration, and transparency in government. Today, the Obama Administration released the second U.S. Open Government National Action Plan, announcing 23 new or expanded open-government commitments that will advance these efforts even further.
…, in September 2011, the United States released its first Open Government National Action Plan, setting a series of ambitious goals to create a more open government. The United States has continued to implement and improve upon the open-government commitments set forth in the first Plan, along with many more efforts underway across government, including implementing individual Federal agency Open Government Plans. The second Plan builds on these efforts, in part through a series of key commitments highlighted in a preview report issued by the White House in October 2013, in conjunction with the Open Government Partnership Annual Summit in London.
Among the highlights of the second National Action Plan:
- “We the People”: The White House will introduce new improvements to the We the People online petitions platform aimed at making it easier to collect and submit signatures and increase public participation in using this platform. Improvements will enable the public to perform data analysis on the signatures and petitions submitted to We the People, as well as include a more streamlined process for signing petitions and a new Application Programming Interface (API) that will allow third-parties to collect and submit signatures from their own websites.
- Freedom of Information Act (FOIA) Modernization: The FOIA encourages accountability through transparency and represents an unwavering national commitment to open government principles. Improving FOIA administration is one of the most effective ways to make the U.S. Government more open and accountable. Today, we announced five commitments to further modernize FOIA processes, including launching a consolidated online FOIA service to improve customers’ experience, creating and making training resources available to FOIA professionals and other Federal employees, and developing common FOIA standards for agencies across government.
- The Global Initiative on Fiscal Transparency (GIFT): The United States will join GIFT, an international network of governments and non-government organizations aimed at enhancing financial transparency, accountability, and stakeholder engagement. The U.S. Government will actively participate in the GIFT Working Group and seek opportunities to collaborate with stakeholders and champion greater fiscal openness and transparency in domestic and global spending.
- Open Data to the Public: Over the past few years, government data has been used by journalists to uncover variations in hospital billings, by citizens to learn more about the social services provided by charities in their communities, and by entrepreneurs building new software tools to help farmers plan and manage their crops. Building on the U.S. Government’s ongoing open data efforts, new commitments will make government data even more accessible and useful for the public, including by reforming how Federal agencies manage government data as a strategic asset, launching a new version of Data.gov to make it even easier to discover, understand, and use open government data, and expanding access to agriculture and nutrition data to help farmers and communities.
- Participatory Budgeting: The United States will promote community-led participatory budgeting as a tool for enabling citizens to play a role in identifying, discussing, and prioritizing certain local public spending projects, and for giving citizens a voice in how taxpayer dollars are spent in their communities. This commitment will include steps by the U.S. Government to help raise awareness of the fact that participatory budgeting may be used for certain eligible Federal community development grant programs.
Other initiatives launched or expanded today include: increasing open innovation by encouraging expanded use of challenges, incentive prizes, citizen science, and crowdsourcing to harness American ingenuity, as well as modernizing the management of government records by leveraging technology to make records less burdensome to manage and easier to use and share. There are many other exciting open-government initiatives described in the second Plan — and you can view them all here.”
Government Digital Service: the best startup in Europe we can't invest in
Saul Klein in the Guardian: “Everyone is rightly excited about the wall of amazing tech-enabled startups being born in Europe and Israel, disrupting massive industries including media, marketing, fashion, retail, travel, finance and transportation. However, there’s one incredibly disruptive startup based in London that is going after one of the biggest markets of all, and is so opaque it is largely unknown in the world of business – and, much to my chagrin, it’s also impossible to invest in.
It’s not a private company, it wasn’t started by “conventional” tech entrepreneurs and the market (though huge) is decidedly unsexy.
Its name is the Government Digital Service (GDS) and it is disrupting the British public sector in an energetic, creative and effective way. In less than two years GDS has hired over 200 staff (including some of the UK’s top digital talent), shipped an award-winning service, and begun the long and arduous journey of completely revolutionising the way that 62 million citizens interact with more than 700 services from 24 government departments and their 331 agencies.
It’s a strange world we live in when the government is pioneering the way that large complex corporations reinvent themselves to not just massively reduce cost and complexity, but to deliver better and more responsive services to their customers and suppliers.
So what is it that GDS knows that every chairman and chief executive of a FTSE100 should know? Open innovation.
1. Open data
• Leads to radical and remarkable transparency like the amazing Transactions Explorer designed by Richard Sargeant and his team. I challenge any FTSE100 to deliver the same by December 2014, or even start to show basic public performance data – if not to the internet, at least to their shareholders and analysts.
• Leads to incredible and unpredictable innovation where public data is shared and brought together in new ways. In fact, the Data.gov.uk project is one of the world’s largest data sources of public data with over 9,000 data sets for anyone to use.
2. Open standards
• Deliver interoperability across devices and suppliers
• Provide freedom from lock-in to any one vendor
• Enable innovation from a level playing field of many companies, including cutting-edge startups
• The Standards Hub from the Cabinet Office is an example of how the government aims to achieve open standards
3. Cloud and open source software and services
• Use of open source, cloud and software-as-a-service solutions radically reduces cost, improves delivery and enables innovation
4. Open procurement
• In March 2011, the UK government set a target to award 25% of spend with third-party suppliers to SMEs by March 2015.”