Intelligent sharing: unleashing the potential of health and care data in the UK to transform outcomes


Report by Future Care Capital: “….Data is often referred to as the ‘new oil’ – the 21st century raw material which, when hitched to algorithmic refinement, may be mined for insight and value – and ‘data flows’ are said to have exerted a greater impact upon global growth than traditional goods flows in recent years (Manyika et al, 2016). Small wonder, then, that governments around the world are endeavouring to strike a balance between individual privacy rights and protections on the one hand, and organisational permissions to facilitate the creation of social, economic and environmental value from broad-ranging data on the other: ‘data rights’ are now of critical importance courtesy of technological advancements. The tension between the two is particularly evident where health and care data in the UK is concerned. Individuals are broadly content with anonymised data from their medical records being used for public benefit but are, understandably, anxious about the implications of the most intimate aspects of their lives being hacked or, else, shared without their knowledge or consent….

The potential for health and care data to be transformative remains, and there is growing concern that opportunities to improve the use of health and care data in peoples’ interests are being missed….

we recommend additional support for digitisation efforts in social care settings. We call upon the Government to streamline processes associated with Information Governance (IG) modelling to help data sharing initiatives that traverse organisational boundaries. We also advocate for investment and additional legal safeguards to make more anonymised data sets available for research and innovation. Crucially, we recommend expediting the scope for individuals to contribute health and care data to sharing initiatives led by the public sector through promotion, education and pilot activities – so that data is deployed to transform public health and support the ‘pivot to prevention’.

In Chapter Two, we explore the rationale and scope for the UK to build upon emergent practice from around the world and become a global leader in ‘data philanthropy’ – to push at the boundaries of existing plans and programmes, and support the development of and access to unrivalled health and care data sets. We look at member-controlled ‘data cooperatives’ and what we’ve termed ‘data communities’ operated by trusted intermediaries. We also explore ‘data collaboratives’ which involve the private sector engaging in data philanthropy for public benefit. Here, we make recommendations about promoting a culture of data philanthropy through the demonstration of tangible benefits to participants and the wider public, and we call upon Government to assess the appetite and feasibility of establishing the world’s first National Health and Care Data Donor Bank….(More)”

 

Avoiding Garbage In – Garbage Out: Improving Administrative Data Quality for Research


Blog by : “In June, I presented the webinar, “Improving Administrative Data Quality for Research and Analysis”, for members of the Association of Public Data Users (APDU). APDU is a national network that provides a venue to promote education, share news, and advocate on behalf of public data users.

The webinar served as a primer to help smaller organizations begin to use their data for research. Participants were given the tools to transform their administrative data into “research-ready” datasets.

I first reviewed seven major issues for administrative data quality and discussed how these issues can affect research and analysis. For instance, issues with incorrect value formats, unit of analysis, and duplicate records can make the data difficult to use. Invalid or inconsistent values lead to inaccurate analysis results. Missing or outlier values can produce inaccurate and biased analysis results. All these issues make the data less useful for research.

Next, I presented concrete strategies for reviewing the data to identify each of these quality issues. I also discussed several tips to make the data review process easier, faster, and easy to replicate. Most importantly among these tips are: (1) reviewing everyvariable in the data set, whether you expect problems or not, and (2) relying on data documentation to understand how the data should look….(More)”.

Carnegie Mellon scientists use app to track foul odors in Pittsburgh


Ashley Murray at Pittsburgh Post-Gazette:If you smell something, say something. Scientists at Carnegie Mellon University want Pittsburghers to put their collective noses to the task and report foul smells using a mobile reporting application called Smell PGH.

Since the app launched last year, more than 1,300 users have reported foul smells more than 4,300 times — most of which they’ve described as “industrial,” “sulfur” or “woodsmoke.”

The app was developed at CMU’s Community Robotics, Education and Technology Empowerment (CREATE) Lab.

“The app is really about the community,” said Beatrice Dias, project director at the CREATE Lab. “To show that you’re not alone in your negative experiences of pollution impact.”

Smartphone users can create a “smell report” within the app, which has the capability to alert the Allegheny County Health Department.

Health department spokeswoman Melissa Wade said the agency has received and followed-up on 3,000 reports generated from the app.

Users can also view a real-time map of all smell reports in and around the city. A new feature added last month allows users to go back in time and play a time-lapse animation of little colored triangles — green, yellow and red, symbolizing varying degrees of smell — that pop up and disappear as odors were reported….

“The goal is I’m trying to predict the smell in the next few hours, like a weather forecast,” Mr. Hsu said. “Let’s say today from 12 to 1 p.m. we have 10 smell reports. I can check not only the smell reports, but the data from other sensor stations around Pittsburgh, so I know during this hour what the reading is of all the air-quality related variables, like PM 2.5, like sulfur and nitrogen oxides, [and] the wind speed, the wind direction. There are a lot of parameters we need to consider.”…

Another goal of this citizen science initiative, Mr. Hsu said, is to improve communication between the public and governmental regulation agencies, like the health department.

“Before this technology if you smelled something bad, you might not be sure if this came from ambient air, your neighborhood or just traffic issues,” Mr. Hsu said. “But if you use the app, you can see a lot of your neighbors are reporting, too. And then maybe the government can use this to see the problems in a city.”…(More)”.

Why blockchain could be your next form of ID as a world citizen


 at TechRepublic: “Blockchain is moving from banking to the refugee crisis, as Microsoft and Accenture on Monday announced a partnership to use the technology to provide a legal form of identification for 1.1 billion people worldwide as part of the global public-private partnership ID2020.

The two tech giants developed a prototype that taps Accenture’s blockchain capabilities and runs on Microsoft Azure. The tech tool uses a person’s biometric data, such as a fingerprint or iris scan, to unlock the record-keeping blockchain technology and create a legal ID. This will allow refugees to have a personal identity record they can access from an app on a smartphone to receive assistance at border crossings, or to access basic services such as healthcare, according to a press release.

The prototype is designed so that personally identifiable information (PII) always exists “off chain,” and is not stored in a centralized system. Citizens use their biometric data to access their information, and chose when to share it—preventing the system from being accessed by tyrannical governments that refugees are fleeing from, as ZDNet noted.

Accenture’s platform is currently used in the Biometric Identity Management System operated by the United Nations High Commissioner for Refugees, which has enrolled more than 1.3 million refugees in 29 nations across Asia, Africa, and the Caribbean. The system is predicted to support more than 7 million refugees from 75 countries by 2020, the press release noted.

“People without a documented identity suffer by being excluded from modern society,” said David Treat, a managing director in Accenture’s global blockchain business, in the press release. “Our prototype is personal, private and portable, empowering individuals to access and share appropriate information when convenient and without the worry of using or losing paper documentation.”

ID is key for accessing education, healthcare, voting, banking, housing, and other family benefits, the press release noted. ID2020’s goal is to create a secure, established digital ID system for all citizens worldwide….

Blockchain will likely play an increasing role in both identification and security moving forward, especially as it relates to the Internet of Things (IoT). For example, Telstra, an Australian telecommunications company, is currently experimenting with a combination of blockchain and biometric security for its smart home products, ZDNet reported….(More)”.

Handbook of Cyber-Development, Cyber-Democracy, and Cyber-Defense


Living Reference Work” edited by Elias G. CarayannisDavid F. J. Campbell, and Marios Panagiotis Efthymiopoulos: “This volume covers a wide spectrum of issues relating to economic and political development enabled by information and communication technology (ICT). Showcasing contributions from researchers, industry leaders and policymakers, this Handbook provides a comprehensive overview of the challenges and opportunities created by technological innovations that are profoundly affecting the dynamics of economic growth, promotion of democratic principles, and the protection of individual, national, and regional rights. Of particular interest is the influence of ICT on the generation and dissemination of knowledge, which, in turn, empowers citizens and accelerates change across all strata of society. Each essay features literature reviews and key references; definition of critical terms and concepts, case examples; implications for practice, policy and theory; and discussion of future directions. Representing such fields as management, political science, economics, law, psychology and education, the authors cover such timely topics as health care, energy and environmental policy, banking and finance, disaster recovery, investment in research and development, homeland security and diplomacy in the context of ICT and its economic, political and social impact…(More)”

Big data allows India to map its fight against human trafficking


Nita Bhalla for Reuters: “An Indian charity is using big data to pinpoint human trafficking hot spots in a bid to prevent vulnerable women and girls vanishing from high-risk villages into the sex trade.

My Choices Foundation uses specially designed technology to identify those villages that are most at risk of modern slavery, then launches local campaigns to sound the alarm….

The analytics tool – developed by Australian firm Quantium – uses a range of factors to identify the most dangerous villages.It draws on India’s census, education and health data and factors such as drought risk, poverty levels, education and job opportunities to identify vulnerable areas….

There are an estimated 46 million people enslaved worldwide, with more than 18 million living in India, according to the 2016 Global Slavery Index. The Index was compiled by the Walk Free Foundation, a global organisation seeking to end modern slavery. Many are villagers lured by traffickers with the promise of a good job and an advance payment, only to find themselves or their children forced to work in fields or brick kilns, enslaved in brothels and sold into sexual slavery.

Almost 20,000 women and children were victims of human trafficking in India in 2016, a rise of nearly 25 percent from the previous year, according to government data.While India has strengthened its anti-trafficking policy in recent years, activists say a lack of public awareness remains one of the biggest impediments…(More)”.

Future Libraries


ARUP: “Libraries are going through a renaissance, both in terms of the social infrastructure they provide and in terms of a diversification of the services and experiences offered. In corporate environments they are playing an increasingly important role in the provision of collaborate workspace and innovation. In communities they are evolving into hubs for education, health, entertainment and work….

This report brings to light significant trends that will influence the future of public, academic and corporate libraries and outlines the implications on their design, operation and user experience. It is the result of a collective exploration through series of workshop events held in London, Melbourne, San Francisco and Sydney, attended by experts in the design and management of libraries. This piece of research presents a glimpse into the future. It explores what we may expect to see as the physical and the digital arena continues to evolve and aims to serve as a foundation for further discussion around the future role of libraries in the communities they serve….(More)”

Improving public services through open government


Tim Hughes at Involve: “As citizens, we rely on public services being accessible and high quality – to give us an education, keep us healthy, make our communities a safe place to be, and ensure our basic needs are met. Public services are critical to our wellbeing and life chances, and building stronger and more prosperous societies. Open government reforms have the potential to improve existing services, and unlock the ideas, knowledge and capacity for new solutions to societal challenges. The idea is simple – public services that are more responsive and accountable to us as citizens – and benefit from our insights, ideas, energy and scrutiny – will work better for us.

This is why, in partnership with the Open Government Partnership, we have written a new guidance paper on how to develop robust and ambitious open public service reforms.  The guidance is particularly targeted at governments and civil society developing open governments commitments through the Open Government Partnership, but should be useful to anyone interested in how transparency, citizen participation and accountability can improve public services.

The paper sets out a framework of open public service reforms, as well as guidance, recommendations, resources and case studies. We will be updating the guide over time, so please do get in touch to let us know what you think….Download the report.

Policymakers around the world are embracing behavioural science


The Economist: “In 2013 thousands of school pupils in England received a letter from a student named Ben at the University of Bristol. The recipients had just gained good marks in their GCSEs, exams normally taken at age 16. But they attended schools where few pupils progressed to university at age 18, and those that did were likely to go to their nearest one. That suggested the schools were poor at nurturing aspiration. In his letter Ben explained that employers cared about the reputation of the university a job applicant has attended. He pointed out that top universities can be a cheaper option for poorer pupils, because they give more financial aid. He added that he had not known these facts at the recipient’s age.

The letters had the effect that was hoped for. A study published in March found that after leaving school, the students who received both Ben’s letter and another, similar one some months later were more likely to be at a prestigious university than those who received just one of the letters, and more likely again than those who received none. For each extra student in a better university, the initiative cost just £45 ($58), much less than universities’ own attempts to broaden their intake. And the approach was less heavy-handed than imposing quotas for poorer pupils, an option previous governments had considered. The education department is considering rolling out the scheme….

Some critics feared that nudges would do little good, and that their effects would fade over time. Others warned that governments were straying perilously close to mass manipulation. More recently, some of the findings on which the behavioural sciences rest have been questioned, as researchers in many fields have sought to replicate famous results, and failed.

By and large those doubts have been allayed. Even if specific results turn out to be mistaken, an experimental, iterative, data-driven approach to policymaking is gaining ground in many places, not just in dedicated units, but throughout government.

Nudging is hardly new. “In Genesis, Satan nudged, and Eve did too,” writes Cass Sunstein of Harvard University. From the middle of the 20th century psychologists such as Stanley Milgram and Philip Zimbardo showed how sensitive humans are to social pressure. Daniel Kahneman and Amos Tversky described the mental shortcuts and biases that influence decision-making. Dale Carnegie and Robert Cialdini wrote popular books on persuasion. Firms, especially in technology, retail and advertising, used behavioural science to shape brand perception and customer behaviour—and, ultimately, to sell more stuff.

But governments’ use of psychological insights to achieve policy goals was occasional and unsystematic. According to David Halpern, the boss of BIT, as far as policymakers were concerned, psychology was “the sickly sibling to economics”. That began to change after Mr Sunstein and Richard Thaler, an economist, published “Nudge”, in 2008. The book attacked the assumption of rational decision-making inherent in most economic models and showed how “choice architecture”, or context, could be changed to “nudge” people to make better choices…..

Now many governments are turning to nudges to save money and do better. In 2014 the White House opened the Social and Behavioural Sciences Team. A report that year by Mark Whitehead of Aberystwyth University counted 51 countries in which “centrally directed policy initiatives” were influenced by behavioural sciences. Non-profit organisations such as Ideas42, set up in 2008 at Harvard University, help run dozens of nudge-style trials and programmes around the world. In 2015 the World Bank set up a group that is now applying behavioural sciences in 52 poor countries. The UN is turning to nudging to help hit the “sustainable development goals”, a list of targets it has set for 2030….

Among the most effective nudges are “social” ones: those that communicate norms or draw on people’s networks. A scheme tested in Guatemala with help from the World Bank and BIT tweaked the wording of letters sent to people and firms who had failed to submit tax returns the previous year. The letters that framed non-payment as an active choice, or noted that paying up is more common than evasion, cut the number of non-payers in the following year and increased the average sum paid. And a trial involving diabetes shows that it matters to nudge at the right moment. In 2014 Hamad Medical Corporation, a health-care provider in Qatar, raised take-up rates for diabetes screening by offering it during Ramadan. That meant most Qataris were fasting, so the need to do so before the test imposed no extra burden….(More)”.

What next for digital social innovation? Realising the potential of people and technology to tackle social challenges


Matt Stokes et al at nesta: “This report, and accompanying guide, produced as part of the DSI4EU project, maps the projects and organisations using technology to tackle social challenges across Europe, and explores the barriers to the growth of digital social innovation.

Key findings

  • There are almost 2,000 organisations and over 1,000 projects involved in digital social innovation (DSI) across Europe, with the highest concentration of activity in Western and Southern Europe.
  • Despite this activity, there are relatively few examples of DSI initiatives delivering impact at scale. The growth of DSI is being held back by barriers at the system level and at the level of individual projects.
  • Projects and organisations involved in DSI are still relatively poorly connected to each other. There is a pressing need to grow strong networks within and across countries and regions to boost collaboration and knowledge-sharing.
  • The growth of DSI is being held back by lack of funding and investment across the continent, especially outside Western Europe, and structural digital skills shortages.
  • Civil society organisations and the public sector have been slow to adopt DSI, despite the opportunity it offers them to deliver better services at a lower cost, although there are emerging examples of good practice from across Europe.
  • Practitioners struggle to engage citizens and users, understand and measure the impact of their digital social innovations, and plan for growth and sustainability.

Across Europe, thousands of people, projects and organisations are using digital technologies to tackle social challenges in fields like healthcare, education, employment, democratic participation, migration and the environment. We call this phenomenon digital social innovation.

Through crowdmapping DSI across Europe, we find that there are almost 2,000 organisations and over 1,000 projects using open and collaborative technologies to tackle social challenges. We complement this analysis by piloting experimental data methods such as Twitter analysis to understand in further depth the distribution of DSI across Europe. You can explore the data on projects and organisations on digitalsocial.eu.

However, despite widespread activity, few initiatives have grown to deliver impact at scale, to be institutionalised, or to become “the new normal”.

In this research, we find that weak networks between stakeholders, insufficient funding and investment, skills shortages, and slow adoption by public sector and established civil society organisations is holding back the growth of DSI…(More)”.